First to the many that continue to follow Justin's progress, thank you and forgive our delay yet once again.
Mama Hen--Justin's heading to SEAMC Wednesday 12/23 for a CT Scan and lower back x-rays. ETA should be 8:00 a.m. I will remind him to give you a call to see if you are in the building or if you were blessed with a few much needed days off.
Ms. Lue--Thanks for the encouragement. It sometimes takes a while to realize so many things are only temporary, regardless of how long it seems it will take to accomplish a goal, this too shall pass and a year from now we will barely remember the anxieties we feel right now. We love you much and appreciate you!!!
For LT.--met your dad yesterday. Seems like a very sweet man and it seemed to perk Justin to have him visit. I sometimes forget you and your family are long-time acquaintances to the Medley family (small world).
For all others not specifically named---there are so many of you that continue to pray and ask for updates, so many that encourage and offer a shoulder. Those are the blessings I say "thank you God" for daily. Even through the moments when I waiver in my faith, I am brought back to the many that keep me grounded and help me get back on track. Bless you all and thank you!!!
For the latest update:
Justin has been experiencing some popping of his spine in his lower back area for a few weeks now. We have finally managed to get an appointment with SEAMC to get a CT Scan of his upper spine because neurology believes it is "leaning". The lower back x-rays will hopefully explain why he is getting the popping which involves throbbing pain through his bottom and legs.
He has also been battling disagreements with his blood pressure, being low some mornings then high and as of late he has been having 182/98 with no obvious signs of what is causing the distress. Last night's episode was accompanied with a massive headache yet we were unable to locate a reason. We massaged his head and exercised his legs, took his shoes off and checked for pressure points--he said it wasn't urinary as for as he knew or bowel. Hopefully some of these tests tomorrow will open doors for discussion as to what is going on.
Therapist Andrew has him plaing Rock Band Drums on a Wi and he's pretty good at it. Wears him out but he's doing super. Also has improved his strength in his left arm to the point that Andrew is at a loss for what else he can do to really push that side. Justin continues to be weird with his body and reactions though. Left side vs. right side, nothing seems to be the "norm" with Justin. We just continue to pray that these are positive signs for recovery and improvement.
Functionality continues to be a slow progress. While his strengths improve weekly, no movements are new to report. Some motion in his thumbs but nothing by way of full hand improvement and some days his right wrist goes weak on him. He continues to have days where sensation is fleeting---can feel a knee today but that same feeling is lost tomorrow. He also indicates some days he can distinguish hot or cold, yet that also comes and goes.
We pray his body is just waiting for that right jump start.
Construction has been slow and I had a momentary meltdown; however, 'tis the season to believe in miracles and know that we shall overcome this portion of the journey as well. It may take us 6 months to wash down all the dust and clean floors and wipe down furniture and reclaim what we threw into what closet or storage unit, etc but there again, it goes back to having faith that it is temporary and will be back to a better routine that we had 2 months ago when we first got him home.
He has been approved for the FES Bike and E-stem machines. This is a wonderful thing. The FES bike uses electrodes to work his legs and he loves it. The e-stem is smaller and can work his abdomens, wrists and several other areas which is also fantastic.
He remains optimistic and upbeat even through the rough nights and the intense spasms he has been having the last few weeks. While some are tough enough to prompt some "mini-fits" that startle me sometimes, he regains himself and works through them.
His chairs are working out great and he even decided to go 'mud riding' yesterday. Of course, that meant a lot of sweeping of tires (and the mud was red and damp, yuk) but it gave us one more thing to laugh about instead of cry!!! And it was encouraging to have him outside playing with that boy of his!!
Well, duty calls---got a precious thing wanting some milk. Will definitely try to update again soon. Forgive the delay, first our computer crashed, then we had to lose it for a while witht he construction going on--we have a small corner in the living room that accommodates us for now and I wanted to give an update to you all.
I'm sure I've forgotten something, but will fit it in the next time.
Merry Christmas to you all, be safe, be blessed and we love you all!!!!
Tuesday, December 22, 2009
Saturday, December 12, 2009
Christmas Spirit
Here we are once again finding me apoligizing for the delay. So many of you have been our inspiration, strength and motivation to move forward and we continue to pray for you all and thank God for you all and feel bad that we don't update enough!!
Things since Thanksgiving---I wish I could say we are slacking on updates because of the holiday season but it is more so because things are that hectic (go figure---like they could get more chaotic than the last 5 months)!!
We have no tree up yet--not sure where to put one based on the home-modifications going on. That in itself is a new story---gotta love contrators!! A 2-3 week event has found itself lasting 5 so far and that's just outside work, no interior work has been done. Did come home Friday to find the new plumbing pipeline leaking and flooding the livingroom closet......no idea why or what will become of that, another day in paradise!!
What we do know:
Doctor visit with NeuroSpine did X-rays and Justin's spine is "leaning like the Tower of Peaza". They want to do a CT Scan and based on some issues he has been having with his lower vertebrae, they want to do some X-rays for that. We are waiting a call to let us know when that is to be done because Doc's office isn't equipped for these and we have to wait to let us know when SEALMC can do them. He goes back to Doc's office on Jan. 2010----------new year, new journey, new blessings, new thanksgivings!!
For those questioning:
We did a follow up with Neuro just to establish a local doc in case we had a need; we thought it was routine. The neck x-ray apparently showed something that concerned them to the point of mentioning a new surgery---going in through the back of the neck and even stated that due to the original urgency and location that perhaps they didn't recognize the tendancy towards his "leaning". Now they have to check if the spine has "fused" or not and determine next step. Justin said "hell no" to another surgery, but we think we have him contemplating that this may play a factor in some things coming back and others not.
Urology wasn't as concerned as we thought they would be so I guess all is well with that part of things. VA had already told us that kidneys and such were different but working well. Gotta love Justin and all of his uniqueness--keeps everyone else on their toes I guess!!
What other portion we didn't expect was his lower back "popping" and Neuro didn't know what to think of that. We have to have x-rays done. When it pops, it gives him a LOT of new throbbing, pain and anxiety about what is going on. NO NEW MOBILITY---just a lot of feeling, throbbing, uncontrolled activity.
WE WILL UPDATE ONCE WE HAVE AN APPOINTMENT AND ANY RESULTS!!
So much more to update on but must do what have to!!
Also, Scotty isn't feeling well at this time--ended up at ER with bad pain which turned out to be possible gout. Please pray that he will overcome his illnesses and rebound!!
So much to update on, house-transportaton-VA-new equipment-lack of equipment-loss of benefits-LOD-----
MaMa Hen---We have NOT forgotten you!! Seems like Rucker has an appointment every 2 weeks and with contractors being out, they get hectic for dad----we WILL be calling you; just can't pinpoint when, sorry!!
Betty/Joe---love you guys!! Charles/Carol---Merry Christmas!! Wayne--thinking of you through this season and pray you will be okay with the loss of Peggy!!
CLUTCH---Justin said Hello---
Anyone not mentioned----we are thinking and praying and thankful and trying to fit it all in. AND will try again to update---so much going on, so little time. I have to go do the "bedtime" stuff now.
Love you guys, Happy holidays, thank each of you............
Things since Thanksgiving---I wish I could say we are slacking on updates because of the holiday season but it is more so because things are that hectic (go figure---like they could get more chaotic than the last 5 months)!!
We have no tree up yet--not sure where to put one based on the home-modifications going on. That in itself is a new story---gotta love contrators!! A 2-3 week event has found itself lasting 5 so far and that's just outside work, no interior work has been done. Did come home Friday to find the new plumbing pipeline leaking and flooding the livingroom closet......no idea why or what will become of that, another day in paradise!!
What we do know:
Doctor visit with NeuroSpine did X-rays and Justin's spine is "leaning like the Tower of Peaza". They want to do a CT Scan and based on some issues he has been having with his lower vertebrae, they want to do some X-rays for that. We are waiting a call to let us know when that is to be done because Doc's office isn't equipped for these and we have to wait to let us know when SEALMC can do them. He goes back to Doc's office on Jan. 2010----------new year, new journey, new blessings, new thanksgivings!!
For those questioning:
We did a follow up with Neuro just to establish a local doc in case we had a need; we thought it was routine. The neck x-ray apparently showed something that concerned them to the point of mentioning a new surgery---going in through the back of the neck and even stated that due to the original urgency and location that perhaps they didn't recognize the tendancy towards his "leaning". Now they have to check if the spine has "fused" or not and determine next step. Justin said "hell no" to another surgery, but we think we have him contemplating that this may play a factor in some things coming back and others not.
Urology wasn't as concerned as we thought they would be so I guess all is well with that part of things. VA had already told us that kidneys and such were different but working well. Gotta love Justin and all of his uniqueness--keeps everyone else on their toes I guess!!
What other portion we didn't expect was his lower back "popping" and Neuro didn't know what to think of that. We have to have x-rays done. When it pops, it gives him a LOT of new throbbing, pain and anxiety about what is going on. NO NEW MOBILITY---just a lot of feeling, throbbing, uncontrolled activity.
WE WILL UPDATE ONCE WE HAVE AN APPOINTMENT AND ANY RESULTS!!
So much more to update on but must do what have to!!
Also, Scotty isn't feeling well at this time--ended up at ER with bad pain which turned out to be possible gout. Please pray that he will overcome his illnesses and rebound!!
So much to update on, house-transportaton-VA-new equipment-lack of equipment-loss of benefits-LOD-----
MaMa Hen---We have NOT forgotten you!! Seems like Rucker has an appointment every 2 weeks and with contractors being out, they get hectic for dad----we WILL be calling you; just can't pinpoint when, sorry!!
Betty/Joe---love you guys!! Charles/Carol---Merry Christmas!! Wayne--thinking of you through this season and pray you will be okay with the loss of Peggy!!
CLUTCH---Justin said Hello---
Anyone not mentioned----we are thinking and praying and thankful and trying to fit it all in. AND will try again to update---so much going on, so little time. I have to go do the "bedtime" stuff now.
Love you guys, Happy holidays, thank each of you............
Wednesday, November 25, 2009
Thanksgiving Updates
To the many, many folks that have kept us inspired and strong through our journey, I say thank you and Happy Thanksgiving. We continue to acknowledge you all as our blessings and wish we had more time to update more often.
Aunt Betty: We've learned the hard way to be patient and home modifications is no exception. After a week, we have one slab poured and no sign of anyone since. With the holidays, I don't expect to see anyone until next week now and won't hold my breath on that one either. We simply do as you said--take one day at a time.
Mama Hen--love you bunches and am glad to hear you have been spoiled with some baby sugars!! Sorry we haven't been able to get Dothan way. Things are hectic and will get more so next week when I go back to work full time but do hope to have a few Fridays to get that way and stop in to see you. Justin does continue to surpass expectations and encourage new comers with his determination.
As of this past week, PT works him hard and the few (and only visits) he has/will have with OT have shown him some exercises to improve his wrist strength. It's just finding the extra time to fit in doing these ourselves.
He told me last night he feels like he is getting more sensation further down his back and he can feel discomfort from leaning against the back of his chair. He already has sensation in the buttocks and can realize when he's been sitting too long. He thought he felt me touching his toes on his right foot the other night when I was doing his leg exercises but it was a fleeting feeling. I just look at each time whether momentarily or more than once as being a good sign. It if happened once, even briefly, it can happen again.
PT Andrew says he can tell the difference in his upper strength and continues to be impressed with how hard Justin works. He said he wishes he had had a way to gauge Justin's strength from day one so he could compare the improvements now.
Justin continues to look for opportunities to acquire transportation so he can go more often than just getting out for "business" things. I hope this comes soon so he can start getting out more. I know we are still early into being home but want to make sure he does not lose his motivation or inspiration or drive to improve.
Still no function in hands or fingers but we continue to pray for that blessing. No other problems with blood pressure although it was a tad-bit low on Monday, no more scares like 2 weeks ago.
As with everyone, days are busy but we will continue to update any improvements or just day-to-day goings on.
We love you all and continue to be ever so grateful for each of you being in our lives.
Happy Thanksgiving!!!!
Aunt Betty: We've learned the hard way to be patient and home modifications is no exception. After a week, we have one slab poured and no sign of anyone since. With the holidays, I don't expect to see anyone until next week now and won't hold my breath on that one either. We simply do as you said--take one day at a time.
Mama Hen--love you bunches and am glad to hear you have been spoiled with some baby sugars!! Sorry we haven't been able to get Dothan way. Things are hectic and will get more so next week when I go back to work full time but do hope to have a few Fridays to get that way and stop in to see you. Justin does continue to surpass expectations and encourage new comers with his determination.
As of this past week, PT works him hard and the few (and only visits) he has/will have with OT have shown him some exercises to improve his wrist strength. It's just finding the extra time to fit in doing these ourselves.
He told me last night he feels like he is getting more sensation further down his back and he can feel discomfort from leaning against the back of his chair. He already has sensation in the buttocks and can realize when he's been sitting too long. He thought he felt me touching his toes on his right foot the other night when I was doing his leg exercises but it was a fleeting feeling. I just look at each time whether momentarily or more than once as being a good sign. It if happened once, even briefly, it can happen again.
PT Andrew says he can tell the difference in his upper strength and continues to be impressed with how hard Justin works. He said he wishes he had had a way to gauge Justin's strength from day one so he could compare the improvements now.
Justin continues to look for opportunities to acquire transportation so he can go more often than just getting out for "business" things. I hope this comes soon so he can start getting out more. I know we are still early into being home but want to make sure he does not lose his motivation or inspiration or drive to improve.
Still no function in hands or fingers but we continue to pray for that blessing. No other problems with blood pressure although it was a tad-bit low on Monday, no more scares like 2 weeks ago.
As with everyone, days are busy but we will continue to update any improvements or just day-to-day goings on.
We love you all and continue to be ever so grateful for each of you being in our lives.
Happy Thanksgiving!!!!
Wednesday, November 18, 2009
Home front news
For those still following, I apologize once again for delays in updates.
As of this date, most know that we have been home now working on our 3rd week. Things have been different coming home.
Mama Hen: We are sorry no call yet. We had hoped for a visit this week but our trip to Ft Rucker proved eventful and time consuming. Board transfers are still a work in progress and time consuming, yet almost comical and bonding---definitely requires some patience and trust!!!
Since the BP scare, not too much else traumatic happening. Lots of visitors by way of PT, OT finally came out (even though she's leaving after this week--don't know what will happen then), nurses and evaluations, and of course the Ft Rucker visit that we thought was a "meet and greet" kind of thing turned into a full blown doctor visit, evaluation, order tests and come back in a week thing.
No construction started yet on the house modifications. They finally came out today to discuss a plan and we hope they will be back Friday to start with foundations. Found out that what was originally quoted as a two week event may now run 5 weeks--looks like a wonderful Christmas!! Yet I'm not complaining---getting started gets us closer to finishing.
PT continues to be impressed with Justin's strength & abilities (as do so many that meet him for the first time). Some have given us reason to question why they came out but if we can learn one new technique or better way, then it's worth their time to come out.
Justin thinks he has some tricep action going on. Says it's still too early to get excited but of course I do----anything new is worth some excitement. He's working hard on ab muscles, after what the RN told him about working them while we put him to bed. Funny how sometimes we think it's a spasm or something we did wrong and it's him working hard!!
As of this date, most know that we have been home now working on our 3rd week. Things have been different coming home.
Mama Hen: We are sorry no call yet. We had hoped for a visit this week but our trip to Ft Rucker proved eventful and time consuming. Board transfers are still a work in progress and time consuming, yet almost comical and bonding---definitely requires some patience and trust!!!
Since the BP scare, not too much else traumatic happening. Lots of visitors by way of PT, OT finally came out (even though she's leaving after this week--don't know what will happen then), nurses and evaluations, and of course the Ft Rucker visit that we thought was a "meet and greet" kind of thing turned into a full blown doctor visit, evaluation, order tests and come back in a week thing.
No construction started yet on the house modifications. They finally came out today to discuss a plan and we hope they will be back Friday to start with foundations. Found out that what was originally quoted as a two week event may now run 5 weeks--looks like a wonderful Christmas!! Yet I'm not complaining---getting started gets us closer to finishing.
PT continues to be impressed with Justin's strength & abilities (as do so many that meet him for the first time). Some have given us reason to question why they came out but if we can learn one new technique or better way, then it's worth their time to come out.
Justin thinks he has some tricep action going on. Says it's still too early to get excited but of course I do----anything new is worth some excitement. He's working hard on ab muscles, after what the RN told him about working them while we put him to bed. Funny how sometimes we think it's a spasm or something we did wrong and it's him working hard!!
Thursday, November 12, 2009
Thursday 11/12
We love you Aunt Betty and Uncle Joe........
And as usual, we need the reminders to keep us posting updates to the many that have helped us see our way through this journey.
I will start with the Monday scare that had dad thinking the worst: BP dropped everytime he attempted to get Justin out of bed. I started the day with leg exercises, arm exercises, a bed bath and clean clothes. Left him as I had before thinking PT was coming out for the first time. BP got as low as 66/46 and scared the "stew" out of dad....so much so that he wouldn't attempt to get him out of bed again and Justin refused to eat in bed.
I left work a bit early and we tried again (not before checking BP first and once again after we got him in the chair). It was better and so was his appetite. No other incident since. Scared daddy......bless his heart!! Justin had this happen once before at VA and he said this time wasn't as bad since he had experienced it before. Didn't help dad---was very cautious for a few days.
PT had come out twice--started Monday and they like him (I haven't met him yet) but if Justin gave a thumbs up, all's okay!! No OT yet but plenty of people coming out---so much I can't keep straight who is in charge of what.
I must say that I still haven't quite gotten the home routine down. I try the stretching at night, stretching 3 times a week in the morning, baths (which haven't been daily yet), meds and all the rest----trying to get a routine yet recognize it's still early into homecoming and limited available space until remods done. He's patient, go figure!!
No chair ready yet. Got word today that equipment isn't ready so no VA trip on the 18th. He was agitated with that news yet I'm hoping enough other stuff is keeping him busy that it won't weigh too heavy until we get the call.
Mama Hen--sorry no call yet to see you. Will figure out something. Can promise if you want to come see the chaos, we're at County Road 1 outside of Enterprise. Will give directions but don't expect you to go out of your way...........just may take some time to hit Dothan area. Have a Dr. appointment on 12/7---will see if that works for you. Most people (especially you having seen him at his worst) don't believe what they see now!!
Have a Ft. Rucker trip Tuesday and sign papers tomorrow for home modification loans. Expect contractors to start next week.
Message to Joe Burley: Ft Rucker took your sticker. SORRY!!! Scraped it right off the window. I told them it was your truck but he didn't seem to appreciate it!! Hope it doesn't cause too much trouble. We went on and off post getting Robyn moved (which still isn't done--lol) and that little fella said "got to come off"...............appreciate the use of the truck VERY MUCH!!!
I'm sure I'm forgetting bunches---have a precious thing wanting to talk at me right now.
Will close for tonight........try another update tomorrow. Love you all, respect and appreciate, believe so much in the power of prayer, keep all of you in our thoughts (Mary & Lydia--thinking of you daily) and will never fully express what it has meant to us that so many have kept us in their hearts and daily lives as we continue our journey!!
Brief Note: Robyn has a hubby coming in for RR this month and a new house trying to get organized. For anyone wanting to house-warm or 1/2 year anniverse or just send a warm 'thinking of you', she would appreciate it!!!!
LOVE YOU ALL and thank you...............prayer makes things happen!!!!
And as usual, we need the reminders to keep us posting updates to the many that have helped us see our way through this journey.
I will start with the Monday scare that had dad thinking the worst: BP dropped everytime he attempted to get Justin out of bed. I started the day with leg exercises, arm exercises, a bed bath and clean clothes. Left him as I had before thinking PT was coming out for the first time. BP got as low as 66/46 and scared the "stew" out of dad....so much so that he wouldn't attempt to get him out of bed again and Justin refused to eat in bed.
I left work a bit early and we tried again (not before checking BP first and once again after we got him in the chair). It was better and so was his appetite. No other incident since. Scared daddy......bless his heart!! Justin had this happen once before at VA and he said this time wasn't as bad since he had experienced it before. Didn't help dad---was very cautious for a few days.
PT had come out twice--started Monday and they like him (I haven't met him yet) but if Justin gave a thumbs up, all's okay!! No OT yet but plenty of people coming out---so much I can't keep straight who is in charge of what.
I must say that I still haven't quite gotten the home routine down. I try the stretching at night, stretching 3 times a week in the morning, baths (which haven't been daily yet), meds and all the rest----trying to get a routine yet recognize it's still early into homecoming and limited available space until remods done. He's patient, go figure!!
No chair ready yet. Got word today that equipment isn't ready so no VA trip on the 18th. He was agitated with that news yet I'm hoping enough other stuff is keeping him busy that it won't weigh too heavy until we get the call.
Mama Hen--sorry no call yet to see you. Will figure out something. Can promise if you want to come see the chaos, we're at County Road 1 outside of Enterprise. Will give directions but don't expect you to go out of your way...........just may take some time to hit Dothan area. Have a Dr. appointment on 12/7---will see if that works for you. Most people (especially you having seen him at his worst) don't believe what they see now!!
Have a Ft. Rucker trip Tuesday and sign papers tomorrow for home modification loans. Expect contractors to start next week.
Message to Joe Burley: Ft Rucker took your sticker. SORRY!!! Scraped it right off the window. I told them it was your truck but he didn't seem to appreciate it!! Hope it doesn't cause too much trouble. We went on and off post getting Robyn moved (which still isn't done--lol) and that little fella said "got to come off"...............appreciate the use of the truck VERY MUCH!!!
I'm sure I'm forgetting bunches---have a precious thing wanting to talk at me right now.
Will close for tonight........try another update tomorrow. Love you all, respect and appreciate, believe so much in the power of prayer, keep all of you in our thoughts (Mary & Lydia--thinking of you daily) and will never fully express what it has meant to us that so many have kept us in their hearts and daily lives as we continue our journey!!
Brief Note: Robyn has a hubby coming in for RR this month and a new house trying to get organized. For anyone wanting to house-warm or 1/2 year anniverse or just send a warm 'thinking of you', she would appreciate it!!!!
LOVE YOU ALL and thank you...............prayer makes things happen!!!!
Sunday, November 8, 2009
9 days home
Well, we have started out 9th day home and once again I find myself apologizing for delays in updating.
First, I must say to all of you Roll Tide Fans-----who scored first!!! I can only imagine how many of you were on the edge of your seats thinking we just might not win..........ha ha
To LT.--his roosting spot is CR 1, down at dad's!!
The week was, as expected, one full of getting routines down, scheduling kept on track and entertaining him since he's confined right now with limited space until modifications can be made. And since dad is playing baby sitter also to "young Justin" (and Preston is a hand full), it will take some time to work out details.
His home health nurse came out last week (he isn't too fond of, said he's leary of anyone that he has to tell how to do their job). Then PT/OT came out for evaluations. She also didn't impress me too much but I should say we are spoiled. Having beed educated at one of the best facilities in the country, it's tough expecting others to live up to that. She was impressed, though, with how much Justin can do for himself and encouraged him to continue. Any form of effort continues to work muscles, and she did offer a suggestion Justin had not thought of, so if you only get one message out of a visit, then it was worth it!!
He has discomfort in his shoulder blades, which as he says--makes us happy, but to him it is uncomfortable and sometimes painful. We tend to get excited over any new thing, whether be pain or not. He was also able to feel the hose extension to his leg bag resting on his knee and chin area. While he seems down that new things were coming almost daily before and have since slowed to once every other week, we continue to be encouraged. He just doesn't understand how he can be regaining so much sensation without improvements in functionality. Yet, we are still only starting month number 5, so we continue to stay positive and thankful.
I must say that Saturday turned out to be an experience (and no it wasn't due to the ball game, lol)....I helped Robyn move some of her stuff to her new home and Justin decided he would ride along. The manual lift doesn't work anywhere near as had hoped with helping get him in and out of vehicles. SO....we went with a board transfer!! But that only works with my car. So once loaded, he sat in the car listening to the game (and music) as we did our loading and unloading. After much exertion---then it was time to grocery shop (so she wouldn't starve in her new home--which moving still isn't finished uggh!) AND Justin was okay with going to WalMart. It was a site with me and Robyn getting him out of the car, so much so we had several people stopping wanting to know if they could help. But we got him out, spent an hour in WalMart and $80 of Justin spending on everything in site (we were starving, so everything looks good when you're hungry) then it was load him back in the car. Somehow, the unloading worked easier but we managed to once again get him in the car and back home. Once home, with Dad's help, we had him safe and sound back in the house.
1:00 getting to bed and that little S**t still wanted to be up by 9 this morning. I miss sleep LOL.
Today we are trying to get some structure around the house, laundry caught up-supplies organized-carpet cleaned (a must, especially with a dog and a 4 year old-ha) and get a game plan for a new week.
PT/OT should be starting this coming week. She hopes to have his PT guy come out early Monday to set goals and a schedule for workouts. Not sure on OT since they lady they have is quitting in 2 weeks and they don't have a replacement. This may be something that means we have to change agencies and start all over again. Another part of being in a new environment trying to get things back to a routine.
Contractor should be out a week from Monday to get started on home changes which will help tremendously just getting some more space and hopefully getting a workout routine will help fill his days, not so much just sitting watching the TV or the wind blow or Preston turn red from all of our clay (another ha ha).
He gets his power chair on the 18th, we pray that will go well. Have no choice but to go back to Augusta for that one. Hopefully soon we will be more "normal" and all of this will become second nature to us all.
We also continue to thank each of you for your support, encouragement, suggestions and overall prayers that have helped us in so many ways!!
We love you all......................Geaux Tigers!!!!!
First, I must say to all of you Roll Tide Fans-----who scored first!!! I can only imagine how many of you were on the edge of your seats thinking we just might not win..........ha ha
To LT.--his roosting spot is CR 1, down at dad's!!
The week was, as expected, one full of getting routines down, scheduling kept on track and entertaining him since he's confined right now with limited space until modifications can be made. And since dad is playing baby sitter also to "young Justin" (and Preston is a hand full), it will take some time to work out details.
His home health nurse came out last week (he isn't too fond of, said he's leary of anyone that he has to tell how to do their job). Then PT/OT came out for evaluations. She also didn't impress me too much but I should say we are spoiled. Having beed educated at one of the best facilities in the country, it's tough expecting others to live up to that. She was impressed, though, with how much Justin can do for himself and encouraged him to continue. Any form of effort continues to work muscles, and she did offer a suggestion Justin had not thought of, so if you only get one message out of a visit, then it was worth it!!
He has discomfort in his shoulder blades, which as he says--makes us happy, but to him it is uncomfortable and sometimes painful. We tend to get excited over any new thing, whether be pain or not. He was also able to feel the hose extension to his leg bag resting on his knee and chin area. While he seems down that new things were coming almost daily before and have since slowed to once every other week, we continue to be encouraged. He just doesn't understand how he can be regaining so much sensation without improvements in functionality. Yet, we are still only starting month number 5, so we continue to stay positive and thankful.
I must say that Saturday turned out to be an experience (and no it wasn't due to the ball game, lol)....I helped Robyn move some of her stuff to her new home and Justin decided he would ride along. The manual lift doesn't work anywhere near as had hoped with helping get him in and out of vehicles. SO....we went with a board transfer!! But that only works with my car. So once loaded, he sat in the car listening to the game (and music) as we did our loading and unloading. After much exertion---then it was time to grocery shop (so she wouldn't starve in her new home--which moving still isn't finished uggh!) AND Justin was okay with going to WalMart. It was a site with me and Robyn getting him out of the car, so much so we had several people stopping wanting to know if they could help. But we got him out, spent an hour in WalMart and $80 of Justin spending on everything in site (we were starving, so everything looks good when you're hungry) then it was load him back in the car. Somehow, the unloading worked easier but we managed to once again get him in the car and back home. Once home, with Dad's help, we had him safe and sound back in the house.
1:00 getting to bed and that little S**t still wanted to be up by 9 this morning. I miss sleep LOL.
Today we are trying to get some structure around the house, laundry caught up-supplies organized-carpet cleaned (a must, especially with a dog and a 4 year old-ha) and get a game plan for a new week.
PT/OT should be starting this coming week. She hopes to have his PT guy come out early Monday to set goals and a schedule for workouts. Not sure on OT since they lady they have is quitting in 2 weeks and they don't have a replacement. This may be something that means we have to change agencies and start all over again. Another part of being in a new environment trying to get things back to a routine.
Contractor should be out a week from Monday to get started on home changes which will help tremendously just getting some more space and hopefully getting a workout routine will help fill his days, not so much just sitting watching the TV or the wind blow or Preston turn red from all of our clay (another ha ha).
He gets his power chair on the 18th, we pray that will go well. Have no choice but to go back to Augusta for that one. Hopefully soon we will be more "normal" and all of this will become second nature to us all.
We also continue to thank each of you for your support, encouragement, suggestions and overall prayers that have helped us in so many ways!!
We love you all......................Geaux Tigers!!!!!
Monday, November 2, 2009
Homecoming
For all of you that have helped so much during the last few months, I wanted to thank you.
We arrived home Friday nite around 9pm after a six hour trip. The transfer out of the car upon our arrival was a new experience. The lift we have at home isn't as accommodating as the other one we had available and wouldn't work with my car; therefore, after about 20 minutes deliberation we decided on a manual board transfer. That transfer took about 60 seconds and couldn't have gone better. We thought he was going to have to sleep in the car there for a bit, but things worked out!!
Saturday was hectic, of course.....we went from organized and routine to home and chaotic, things like where's the box with the supplies to where to throw the used linens and supply trash until you can get him up and about. Which "up and about" isn't very much since he's in a pieced-together manual that won't roll across carpet--more home mods to deal with!! Even the Molift won't cooperate that well on carpet, another way for mama to build some muscles, ha ha!
Was late getting to bed Saturday, good thing we gained an hour but Justin doesn't like staying in bed late so Sunday found him a bit off and in need of the structure we had in Atlanta. I told him I was in need of serious sleep but know that we do need to get our system/groove back so this can all fall back into place----can't let the location change get us overwhelmed with schedules and routines.
His impatience is resurfacing and reasonably so, sitting out here looking at corn fields and wind blowing isn't exactly what he's been doing for 4 months and none of us want to see him lose his momentum for rehabilitation. He's qualified for home health so we're waiting to hear how soon that will start---will give him some workouts until we can get transportation and outpatient treatments started; also keeps him with something to do while I work and he's home with Dad and Preston, who will both be busy-one being a kid and the other being tired from handling them both all day (lol)!!!
Mama Hen---he wants to make a trip to Dothan soon when we can get more comfortable with the manual transfers; he asked me to get your schedule so he can come surprise you one day!!
I was due to show up for work Monday but asked for one more day to try to get more organized before trying to fit that into my "new normal" routine. I look forward to seeing each of you and thanking you for everything.
We continue to pray for full recovery and thank God for each improvement, new sensation or overall easy transition........so much that makes such big differences!!!
LT.----you didn't go into the dog house, Justin didn't have his phone for a few days (and it was turned off, by accident somehow). Hope you have gotten your message from him and are feeling some "brotherly love".............
Ms. Henri: we need to talk whenever you have some time that won't interfere with my coming back to work. I need some serious pointers on how to make this all work!!
For everyone: We love you all and are so grateful!!
I now have weight shifts and laundry and unpacking and mail to answer and loans to try to qualify for and a 4 year old wanting to play and a hubby that's been home and now has to relearn all of the things that Justin needs everyday!!! Happy, happy-Joy, Joy--Fun times!!!
Will see some of you tomorrow and will continue to update all of you!!!
We arrived home Friday nite around 9pm after a six hour trip. The transfer out of the car upon our arrival was a new experience. The lift we have at home isn't as accommodating as the other one we had available and wouldn't work with my car; therefore, after about 20 minutes deliberation we decided on a manual board transfer. That transfer took about 60 seconds and couldn't have gone better. We thought he was going to have to sleep in the car there for a bit, but things worked out!!
Saturday was hectic, of course.....we went from organized and routine to home and chaotic, things like where's the box with the supplies to where to throw the used linens and supply trash until you can get him up and about. Which "up and about" isn't very much since he's in a pieced-together manual that won't roll across carpet--more home mods to deal with!! Even the Molift won't cooperate that well on carpet, another way for mama to build some muscles, ha ha!
Was late getting to bed Saturday, good thing we gained an hour but Justin doesn't like staying in bed late so Sunday found him a bit off and in need of the structure we had in Atlanta. I told him I was in need of serious sleep but know that we do need to get our system/groove back so this can all fall back into place----can't let the location change get us overwhelmed with schedules and routines.
His impatience is resurfacing and reasonably so, sitting out here looking at corn fields and wind blowing isn't exactly what he's been doing for 4 months and none of us want to see him lose his momentum for rehabilitation. He's qualified for home health so we're waiting to hear how soon that will start---will give him some workouts until we can get transportation and outpatient treatments started; also keeps him with something to do while I work and he's home with Dad and Preston, who will both be busy-one being a kid and the other being tired from handling them both all day (lol)!!!
Mama Hen---he wants to make a trip to Dothan soon when we can get more comfortable with the manual transfers; he asked me to get your schedule so he can come surprise you one day!!
I was due to show up for work Monday but asked for one more day to try to get more organized before trying to fit that into my "new normal" routine. I look forward to seeing each of you and thanking you for everything.
We continue to pray for full recovery and thank God for each improvement, new sensation or overall easy transition........so much that makes such big differences!!!
LT.----you didn't go into the dog house, Justin didn't have his phone for a few days (and it was turned off, by accident somehow). Hope you have gotten your message from him and are feeling some "brotherly love".............
Ms. Henri: we need to talk whenever you have some time that won't interfere with my coming back to work. I need some serious pointers on how to make this all work!!
For everyone: We love you all and are so grateful!!
I now have weight shifts and laundry and unpacking and mail to answer and loans to try to qualify for and a 4 year old wanting to play and a hubby that's been home and now has to relearn all of the things that Justin needs everyday!!! Happy, happy-Joy, Joy--Fun times!!!
Will see some of you tomorrow and will continue to update all of you!!!
Thursday, October 29, 2009
Update
Sorry for the delay. They have loaded tons into this last week and lots of last minute things which throw off a day's schedule for laundry or phone calling.
As of tonight, we are leaving the great city of Atlanta around 4:00 EST Friday October 30th. And what I know right now, it took an mini-version of an act of congress to finally get confirmation his bed would be delivered and set up around 5:00 CST TODAY!!
He (we) have a full day tomorrow---meet with case manager in the morning at 9; OT and Fine Motor skills then lunch, PT and Graduation after lunch and one last manual transfer lesson before heading out.
What we found out today is that Justin went to Day Program already having some skills that Day Program usually trains and since his strength isn't 100% of what they like, they couldn't start the process of training "advanced" skills although they have touched on a few which PT/OT feels will be beneficial at home and for his return which will hopefully be first of the year. They've started E-stem on his abs today since they feel he may have some ab muscle function/use returning and have noted instructions on how to E-stem his scapulas. They've given him a tenodesis brace for his left hand because that one seems to be the weakest.
He has some more "odd" sensations coming back and we continue to hope this is a positive sign that things are beginning to wake up; and we continue to remember we are still early in his recovery, only 4 months into this!!
He rode a para-bike around the gym yesterday--was awesome!! Will help build his upper strength and will allow for him to actually ride bikes with Preston; of course, it has a good price tag but Justin said it's well worth it and hopes to acquire one in the near future for continued improvement while at home.
Home health has been approved so there shouldn't be too much down time especially when incorporated into what we've learned. We just need to get focused on a daily schedule (or home plan) and get it implemented.
A lot of other things still remain "up in the air" because they can't be put in place until he does his med-board through the military which could take another 6-12 months; but we'll take this one step at a time, one day at a time.
We continue to thank each of you for so much assistance, support, help, encouragement and overall keeping an eye on us. Also, Ms. Henri---the Governor's office turned our "unofficial" complaint over to another department. I'll get that information from Scotty's email for you. We haven't heard yet what they intend to do but Justin has said he still wants to file an official complaint against the Augusta VA. We'll keep you updated on that too!!!
Emmanuelle---we know you've had us in your thoughts!!! We hope that your husband is okay and pray for a speedy recovery and hope for blessings and support as we've seen in our 4 month journey.
Aunt T----we love you guys too and hope to see you all soon!! You will be overjoyed when you see Justin again.
For everyone---Thank you so very much!! Hope to see you all very, very soon!!!
As of tonight, we are leaving the great city of Atlanta around 4:00 EST Friday October 30th. And what I know right now, it took an mini-version of an act of congress to finally get confirmation his bed would be delivered and set up around 5:00 CST TODAY!!
He (we) have a full day tomorrow---meet with case manager in the morning at 9; OT and Fine Motor skills then lunch, PT and Graduation after lunch and one last manual transfer lesson before heading out.
What we found out today is that Justin went to Day Program already having some skills that Day Program usually trains and since his strength isn't 100% of what they like, they couldn't start the process of training "advanced" skills although they have touched on a few which PT/OT feels will be beneficial at home and for his return which will hopefully be first of the year. They've started E-stem on his abs today since they feel he may have some ab muscle function/use returning and have noted instructions on how to E-stem his scapulas. They've given him a tenodesis brace for his left hand because that one seems to be the weakest.
He has some more "odd" sensations coming back and we continue to hope this is a positive sign that things are beginning to wake up; and we continue to remember we are still early in his recovery, only 4 months into this!!
He rode a para-bike around the gym yesterday--was awesome!! Will help build his upper strength and will allow for him to actually ride bikes with Preston; of course, it has a good price tag but Justin said it's well worth it and hopes to acquire one in the near future for continued improvement while at home.
Home health has been approved so there shouldn't be too much down time especially when incorporated into what we've learned. We just need to get focused on a daily schedule (or home plan) and get it implemented.
A lot of other things still remain "up in the air" because they can't be put in place until he does his med-board through the military which could take another 6-12 months; but we'll take this one step at a time, one day at a time.
We continue to thank each of you for so much assistance, support, help, encouragement and overall keeping an eye on us. Also, Ms. Henri---the Governor's office turned our "unofficial" complaint over to another department. I'll get that information from Scotty's email for you. We haven't heard yet what they intend to do but Justin has said he still wants to file an official complaint against the Augusta VA. We'll keep you updated on that too!!!
Emmanuelle---we know you've had us in your thoughts!!! We hope that your husband is okay and pray for a speedy recovery and hope for blessings and support as we've seen in our 4 month journey.
Aunt T----we love you guys too and hope to see you all soon!! You will be overjoyed when you see Justin again.
For everyone---Thank you so very much!! Hope to see you all very, very soon!!!
Monday, October 26, 2009
Birthday Monday
Well, the day started out with a spat---I guess I woke up on the wrong side of the bed and sleep deprived because my nerves were short. So much for starting the birthday off with good spirits.
9a.m. theraphy was learning to hook him to the FES Bike then he spent an hour cycling; he loves the bike, makes his leg feel good!! Then it was proning on the mat with terrible 3s; Robyn finished out that one as Preston and I came back to housing to get his cake (Robyn made a cake that looks like a pooltable and cupcakes as the cue balls----turned out amazing, will try to get pics posted soon). He received balloons from his team that was with him during inpatient and Doc Wayne's was super--Abby Cadabby. He said the balloon surprises were neat and his "ladies" had lunch with him---he does miss his Therapy ladies from Inpatient.
Afternoon was full of classes for him and was supposed to be full of chores for me but I kinda took an afternoon off and watched cartoons with Preston then dozed for about 45 minutes. Wasted time but I think it helped reduce some of my crankiness!!
AND---Justin may have some ab muscles coming back!! PT Amanda checked it out this morning and said they would do some more tests tomorrow or Wednesday but she seems impressed with what he was doing and what she felt.
We start PT and OT training in housing tomorrow, manual board transfers and "Lifeskills"--not sure what that means. Days getting closer to home time--scary but a new page!!!
Will try to update again; need to get refocused and organized!! Love you all and appreciate you all so very much!!
9a.m. theraphy was learning to hook him to the FES Bike then he spent an hour cycling; he loves the bike, makes his leg feel good!! Then it was proning on the mat with terrible 3s; Robyn finished out that one as Preston and I came back to housing to get his cake (Robyn made a cake that looks like a pooltable and cupcakes as the cue balls----turned out amazing, will try to get pics posted soon). He received balloons from his team that was with him during inpatient and Doc Wayne's was super--Abby Cadabby. He said the balloon surprises were neat and his "ladies" had lunch with him---he does miss his Therapy ladies from Inpatient.
Afternoon was full of classes for him and was supposed to be full of chores for me but I kinda took an afternoon off and watched cartoons with Preston then dozed for about 45 minutes. Wasted time but I think it helped reduce some of my crankiness!!
AND---Justin may have some ab muscles coming back!! PT Amanda checked it out this morning and said they would do some more tests tomorrow or Wednesday but she seems impressed with what he was doing and what she felt.
We start PT and OT training in housing tomorrow, manual board transfers and "Lifeskills"--not sure what that means. Days getting closer to home time--scary but a new page!!!
Will try to update again; need to get refocused and organized!! Love you all and appreciate you all so very much!!
Thursday, October 22, 2009
After further review
Okay Ms. Henri---I've about decided my brain isn't working well at all today. Maybe he'll be too tired to think twice about the blog and we'll be safe until Monday!!!!
Updating Thursday 10/22
Sorry for the delays (again)!!
Ms. Lue--probably could use a hug right now but would probably cry like a baby (PMSing or something). Got lots to do and seems like so little time.
Looks like tentative date to come home is first week of November. They feel Justin's wrist strength is not strong enough to accomplish some of the goals and said they couldn't spend 6 weeks working on wrists when they could reiterate what he needs for 'the now'. He can come back if he shows any improvements and will be placed on a list should availability be there when he does strengthen and progress.
Days here are busy, busy---especially now with them wanting to hands-on teach me everything. Will work manual transfers next week and he gets on the FES Bike Monday--it works the legs with electrodes (he loves it, was excited). Wanted to do the tilt table too but PT Amanda said she would rather focus on other things than stabilizing blood pressure and weining off the binder---so we'll see what happens. Day program keeps you busy, when you're not doing laundry every day (ha).
Justin continues to be a challenge for them because he doesn't not behave or respond in the "clinical" way---has sensations in areas he shouldn't, feels discomfort in areas that can't be explained, has no use of certain things and some use of others that don't make sense when you piece them together into the whole picture.
He's been hurting awful this week and taking more pain meds than he's done in the past month. He even said he feels plum uncomfortable and it's frustrating because he knows how he wants to move to try to get to feel better but the physical side won't cooperate. His spasms have been so bad at night that he kicks out the quad pads everytime I try to position them (which is not good, his feet are supposed to stay off the bed for pressure points and he's kicking them out every hour), some rough-rough nites as of late. He took his first sleeping pill last night in hopes it would relax his body and help him rest better-----it didn't!!
He's doing more manual transfers this week and is trying to get through today without his Tet Hoses (are for blood pressure and circulation) and can sit in his chair from after lunch until bed time without his binder now. Although, we found out yesterday that his binder helps in more ways than we realized so he said he wasn't going to rush getting rid of that totally just yet!
We had company Monday until early this morning--cousin and friend from Cajun Country. I swear I still see phantom movement--yesterday Brandi was helping with the sling so we could lift him off the mat and it was her first time and the sling was under his right leg and it looked as though he lifted his knee and thigh so she could get it out from under him---he thought nothing of it and kept on doing what he was doing but we looked at each other like "did he just do that" I can move his leg in the chair to do something and it's almost like he moves it back into the spot it just came from. He says (and his therapists too) it's just spasms but how can a spasm be so specific to put a foot or leg back in a specific spot???!!
He's got an E-Stem machine which sends electrical impulses through the body and he's been using that this week on his right arm trying to stimulate wrist action and hopefully strengthening; right wrist is the weakest even though it has more functionality (I told you he was weird).
We are not ready at all for the homecoming---so much to do and so much paperwork; looks like he'll be living out of the living room for a bit and I think he's somewhat nervous about going home but this too shall be overcome and I know the New Year will see us onto a new journey and he'll be settled in and working towards improving in no time.
I want to thank everyone who donated and participated in the yard sale. It was truly appreciated and helped out so very much!!! Also for those who sent words of encouragement and some extra "support", we pray your kindness is blessed 10 Fold.
I was asked today how much community support did we feel we had and I immediately advised the gentleman that we would not have made it this far without the support of my co-workers and friends!!! We thank you all so much, our family is stronger and blessed because of you all...
Now I'm PMSing just thinking about you all (lol)---I know there's so so much I'm forgetting and for all that have followed it's not fair for me to be so scatter-brained so I will try to start getting notes taken again so that when I get a chance to sit in front of the laptop for updates, I'll have it all there to refresh my memory and write it down.
Oh, he took his flu and pneumonia shots yesterday; had me worried last night that he was going to be sick from them but he did good through the night and appears to be better this morning. Just complaining about his neck "hurting like H**L"............
His birthday is Monday and we think we've managed to coordinate a surprise for him up here that he won't be expecting (he was all prepared to have it be just another day). Any birthday wishes you may have, please post them---he's at housing now and can read them on the laptop!!
Well, duty calls in 20 minutes----gotta meet him to set him up for lunch then it's back to the gym for more learning!!
Love you all, will keep you updated (will try harder) and thank you all so very much!!!!!!!!!!
Ms. Lue--probably could use a hug right now but would probably cry like a baby (PMSing or something). Got lots to do and seems like so little time.
Looks like tentative date to come home is first week of November. They feel Justin's wrist strength is not strong enough to accomplish some of the goals and said they couldn't spend 6 weeks working on wrists when they could reiterate what he needs for 'the now'. He can come back if he shows any improvements and will be placed on a list should availability be there when he does strengthen and progress.
Days here are busy, busy---especially now with them wanting to hands-on teach me everything. Will work manual transfers next week and he gets on the FES Bike Monday--it works the legs with electrodes (he loves it, was excited). Wanted to do the tilt table too but PT Amanda said she would rather focus on other things than stabilizing blood pressure and weining off the binder---so we'll see what happens. Day program keeps you busy, when you're not doing laundry every day (ha).
Justin continues to be a challenge for them because he doesn't not behave or respond in the "clinical" way---has sensations in areas he shouldn't, feels discomfort in areas that can't be explained, has no use of certain things and some use of others that don't make sense when you piece them together into the whole picture.
He's been hurting awful this week and taking more pain meds than he's done in the past month. He even said he feels plum uncomfortable and it's frustrating because he knows how he wants to move to try to get to feel better but the physical side won't cooperate. His spasms have been so bad at night that he kicks out the quad pads everytime I try to position them (which is not good, his feet are supposed to stay off the bed for pressure points and he's kicking them out every hour), some rough-rough nites as of late. He took his first sleeping pill last night in hopes it would relax his body and help him rest better-----it didn't!!
He's doing more manual transfers this week and is trying to get through today without his Tet Hoses (are for blood pressure and circulation) and can sit in his chair from after lunch until bed time without his binder now. Although, we found out yesterday that his binder helps in more ways than we realized so he said he wasn't going to rush getting rid of that totally just yet!
We had company Monday until early this morning--cousin and friend from Cajun Country. I swear I still see phantom movement--yesterday Brandi was helping with the sling so we could lift him off the mat and it was her first time and the sling was under his right leg and it looked as though he lifted his knee and thigh so she could get it out from under him---he thought nothing of it and kept on doing what he was doing but we looked at each other like "did he just do that" I can move his leg in the chair to do something and it's almost like he moves it back into the spot it just came from. He says (and his therapists too) it's just spasms but how can a spasm be so specific to put a foot or leg back in a specific spot???!!
He's got an E-Stem machine which sends electrical impulses through the body and he's been using that this week on his right arm trying to stimulate wrist action and hopefully strengthening; right wrist is the weakest even though it has more functionality (I told you he was weird).
We are not ready at all for the homecoming---so much to do and so much paperwork; looks like he'll be living out of the living room for a bit and I think he's somewhat nervous about going home but this too shall be overcome and I know the New Year will see us onto a new journey and he'll be settled in and working towards improving in no time.
I want to thank everyone who donated and participated in the yard sale. It was truly appreciated and helped out so very much!!! Also for those who sent words of encouragement and some extra "support", we pray your kindness is blessed 10 Fold.
I was asked today how much community support did we feel we had and I immediately advised the gentleman that we would not have made it this far without the support of my co-workers and friends!!! We thank you all so much, our family is stronger and blessed because of you all...
Now I'm PMSing just thinking about you all (lol)---I know there's so so much I'm forgetting and for all that have followed it's not fair for me to be so scatter-brained so I will try to start getting notes taken again so that when I get a chance to sit in front of the laptop for updates, I'll have it all there to refresh my memory and write it down.
Oh, he took his flu and pneumonia shots yesterday; had me worried last night that he was going to be sick from them but he did good through the night and appears to be better this morning. Just complaining about his neck "hurting like H**L"............
His birthday is Monday and we think we've managed to coordinate a surprise for him up here that he won't be expecting (he was all prepared to have it be just another day). Any birthday wishes you may have, please post them---he's at housing now and can read them on the laptop!!
Well, duty calls in 20 minutes----gotta meet him to set him up for lunch then it's back to the gym for more learning!!
Love you all, will keep you updated (will try harder) and thank you all so very much!!!!!!!!!!
Monday, October 19, 2009
Day 4, 5, 6 and 7
Day 4 found Preston turning 4 years old and Robyn was going to surprise Justin with an early visit but she let the 'cat out of the bag' during a text that she was coming up that evening so he knew ahead of time she was coming (lol).
Did typical day in the gym and spent half the day trying to find a ride to Target---for this to be Atlanta it sure sucks when trying to get transportation, everyone wants a 24 hour notice and you get an answering machine or you wait 15 minutes on hold. Finally lucked up and found out that inpatient was doing an "outing" to of all places Target and because they all love Justin so much, they let him hitch a ride (mama of course had to drive Atlanta traffic-ha). Robyn and Preston made their way in about the time we were getting ready to check out and we headed back to housing for a late but fun birthday for Preston. Robyn has pics so I'll try to get some from her camera loaded and post them.
Long day turned into late nite so day 5 Friday was started on about 6 hours sleep (and it's not straight through sleep---feels like having a new born all over again, the waking up 3 times a night----but I'm not complaining).
Robyn and Preston spent some time with Justin that morning in the gym while I did some hurry up laundry. After that, I kept Preston busy while Robyn was allowed to stay in the gym and have some hands on with this therapy and learn some stuff. She said the workouts are brutal yet awesome, "they really work him"!! His OT Jamie and Justin both got her hooked on RummiKub also and Justin is so hooked he bought one Thursday---get ready all you folks back home, you ever come visit Justin here or at home---I'm sure it will be game on with Rummikub--it just wears him out sometimes using his hands and leaning over to see what's been played but he loves playing it and it's another form of therapy!
Day 6 and 7 were our first official weekend days at housing. Dad couldn't make the trip due to trying to get transportation going and working on paper work side of things.
It was COLD here so we didn't spend much time out Saturday. Sunshine prevailed on Sunday so we spent about an hour in the Garden so Preston could play with some of his birthday toys!!
Health wise Justin is doing good--I'm worried a bit this morning with him being so cold--left here with a long sleeve, a hoodie and beanie, a blanket and long pants and was still cold---all bundled up like he was expecting snow. He still hasn't had his flu & pneumonia shot yet; they are supposed to be getting those done for him---I pray it doesn't make him sick.
So far things are good--no bed sores while on my watch (knock on wood) but he has gotten a bit constipated---only one night without getting results but it's taking around an hour each night and not getting what he expects---he's tried over the counter help but nothing. He said last night that if the Milk of Mag didn't help maybe he would feel better---I said "whew" thank you---one of those 'can't get blood from turnips things'---but I understand his concerns, wouldn't want it getting backed up on him and causing intestional problems.
We had planned on a movie Saturday nite---me & Preston were to do Cloudy with Meatballs while Justin & Robyn did Law Abiding Citizen---I called Friday with our 24 hour reservation, made sure we mapped out how far the theater was and packed for any emergency then Saturday at 7:00 we went downstairs to wait for a 7:15 pickup (handicap accessible)--7:15 no show, 7:25 no show, I called and waited 5 minutes to finally get a "hold on" then waited again on hold--by this time Justin was disappointed and went back upstairs, after a third time of him wanting to put me on hold I said BS and hung up, getting around up here SUCKS!!!
He seemed better Sunday but I did lay back down after the early morning rise and put us a bit late getting started Sunday---of course, everyone slept in so I didn't feel too awful bad. Got Robyn and Preston on their way home last night and tucked ourselves in for another new week.
As for Justin: it's hard to know what's going on, he said the other night he was laying in bed and could feel that he was uncomfortable wanting to resposition himself and he said he couldn't tell if it was his imagination or not but it felt like his foot/ankle were moving; then there are the days when he says he can feel like his legs and feet are "sore" from being in one spot too long and you need to stretch them out. He said he sits there and tries so hard to move them--he said it's a weird feeling having your body feel that it needs to move but not being able to move it, makes us curious if he's supposed to be feeling these things!!
He's also wondering why he gets COLD during the day but HOT during the night! He wants the air kept down on 68 at night and said it feels like his legs are on fire!! Blood pressure has been doing good, been somewhat low a few days but we're keeping an eye on things---low to us is normal to a paralyzed--yesterday was 108/56 but he's been doing good with his around 120/70
I'm sure I'm forgetting tons of things---it's been very busy and so much going on and moving so fast and I barely have time to think about posting. Hopefully week two will find us with a better routine so that I can update daily. Still so much to do and praying it all comes together soon; he's definitely paranoid we won't have the house done in time for his departure---busy, busy!!!
We wanted to thank you all so very much for the yard sale and the money; it will definitely help us out more than you know!!! We continue to Thank God for all of you and your generosity, guidance, support and prayers!! May you all be as blessed as we are...............
Love you all and will try to get better focused and organized for the updates!!
Did typical day in the gym and spent half the day trying to find a ride to Target---for this to be Atlanta it sure sucks when trying to get transportation, everyone wants a 24 hour notice and you get an answering machine or you wait 15 minutes on hold. Finally lucked up and found out that inpatient was doing an "outing" to of all places Target and because they all love Justin so much, they let him hitch a ride (mama of course had to drive Atlanta traffic-ha). Robyn and Preston made their way in about the time we were getting ready to check out and we headed back to housing for a late but fun birthday for Preston. Robyn has pics so I'll try to get some from her camera loaded and post them.
Long day turned into late nite so day 5 Friday was started on about 6 hours sleep (and it's not straight through sleep---feels like having a new born all over again, the waking up 3 times a night----but I'm not complaining).
Robyn and Preston spent some time with Justin that morning in the gym while I did some hurry up laundry. After that, I kept Preston busy while Robyn was allowed to stay in the gym and have some hands on with this therapy and learn some stuff. She said the workouts are brutal yet awesome, "they really work him"!! His OT Jamie and Justin both got her hooked on RummiKub also and Justin is so hooked he bought one Thursday---get ready all you folks back home, you ever come visit Justin here or at home---I'm sure it will be game on with Rummikub--it just wears him out sometimes using his hands and leaning over to see what's been played but he loves playing it and it's another form of therapy!
Day 6 and 7 were our first official weekend days at housing. Dad couldn't make the trip due to trying to get transportation going and working on paper work side of things.
It was COLD here so we didn't spend much time out Saturday. Sunshine prevailed on Sunday so we spent about an hour in the Garden so Preston could play with some of his birthday toys!!
Health wise Justin is doing good--I'm worried a bit this morning with him being so cold--left here with a long sleeve, a hoodie and beanie, a blanket and long pants and was still cold---all bundled up like he was expecting snow. He still hasn't had his flu & pneumonia shot yet; they are supposed to be getting those done for him---I pray it doesn't make him sick.
So far things are good--no bed sores while on my watch (knock on wood) but he has gotten a bit constipated---only one night without getting results but it's taking around an hour each night and not getting what he expects---he's tried over the counter help but nothing. He said last night that if the Milk of Mag didn't help maybe he would feel better---I said "whew" thank you---one of those 'can't get blood from turnips things'---but I understand his concerns, wouldn't want it getting backed up on him and causing intestional problems.
We had planned on a movie Saturday nite---me & Preston were to do Cloudy with Meatballs while Justin & Robyn did Law Abiding Citizen---I called Friday with our 24 hour reservation, made sure we mapped out how far the theater was and packed for any emergency then Saturday at 7:00 we went downstairs to wait for a 7:15 pickup (handicap accessible)--7:15 no show, 7:25 no show, I called and waited 5 minutes to finally get a "hold on" then waited again on hold--by this time Justin was disappointed and went back upstairs, after a third time of him wanting to put me on hold I said BS and hung up, getting around up here SUCKS!!!
He seemed better Sunday but I did lay back down after the early morning rise and put us a bit late getting started Sunday---of course, everyone slept in so I didn't feel too awful bad. Got Robyn and Preston on their way home last night and tucked ourselves in for another new week.
As for Justin: it's hard to know what's going on, he said the other night he was laying in bed and could feel that he was uncomfortable wanting to resposition himself and he said he couldn't tell if it was his imagination or not but it felt like his foot/ankle were moving; then there are the days when he says he can feel like his legs and feet are "sore" from being in one spot too long and you need to stretch them out. He said he sits there and tries so hard to move them--he said it's a weird feeling having your body feel that it needs to move but not being able to move it, makes us curious if he's supposed to be feeling these things!!
He's also wondering why he gets COLD during the day but HOT during the night! He wants the air kept down on 68 at night and said it feels like his legs are on fire!! Blood pressure has been doing good, been somewhat low a few days but we're keeping an eye on things---low to us is normal to a paralyzed--yesterday was 108/56 but he's been doing good with his around 120/70
I'm sure I'm forgetting tons of things---it's been very busy and so much going on and moving so fast and I barely have time to think about posting. Hopefully week two will find us with a better routine so that I can update daily. Still so much to do and praying it all comes together soon; he's definitely paranoid we won't have the house done in time for his departure---busy, busy!!!
We wanted to thank you all so very much for the yard sale and the money; it will definitely help us out more than you know!!! We continue to Thank God for all of you and your generosity, guidance, support and prayers!! May you all be as blessed as we are...............
Love you all and will try to get better focused and organized for the updates!!
Updates
Will try to update you guys soon. Need to get Justin to gym to find out what this week's schedule is like. Not sure I like not knowing until Monday morning what we are expected to do but we'll deal with it.
Was busy weekend with Justin being here for first time on the weekend; also was Preston's 4th birthday Thursday-busy weekend.
Love you guys and hopefully I can come back and get some laundry done (on the 2nd floor--praying that these washers are available and don't have to go to 3rd floor LOL).
Happy Monday!!
Was busy weekend with Justin being here for first time on the weekend; also was Preston's 4th birthday Thursday-busy weekend.
Love you guys and hopefully I can come back and get some laundry done (on the 2nd floor--praying that these washers are available and don't have to go to 3rd floor LOL).
Happy Monday!!
Wednesday, October 14, 2009
Day 3
I just offered to update the blog tonight from Justin's own words but he's eating Watermelon Twizzlers and watching NCIS so he politely said Nah!!!
Well, Justin finally made it to bed around 1am this morning---nothing wrong, he just found himself intrigued with the stories on the history channel and kept on going until he finally realized that mama can't go to sleep until he does. Shower done and bowel program and it was off to bed.
4a.m. rolled around quick for his turning (and no accidental leaking with his bed bag, yippee) then it was alarm time to get up for a new day. Things went smoother this morning and we even had 20 minutes to spare before his 9am start time.
Met with the nurse for the outpatient program which was basic Q&A with some suggestions; she's scheduling Justin to meet with Dr. Lin (new doc who watches over the day program patients). It was PT time with Marta (I think she's Russian--don't always understand her) but we "proned" Justin--which is basically laying him on the mat on his stomach--she showed him some exercises to do laying that way and basically said "see you later", got mine and Justin's attention so we were all "see you later??", she asked if I could roll him back over and get him back in the chair, which I can, so she left us to do his arm exercises and get him on his way to the next person.
He had Wonderful Wayne next--psychiatrist--who actually thinks we're okay people, even with our quirks and Justin's sarcastic sense of humor, go figure--we may actually be normal (LOL).
It was TR time next which was full of the game RummiKub---fun game but was designed to work fine motor skills--the three players there all have difficulties using their hands so it was interesting to see them all trying so hard while still enjoying the game. There was some frustration with Justin not being able to grasp (they are like dominoes) but he relaxed with it and seemed to come around (his friend Sam was in there and they are a hoot when together).
OT worked with him next and tried some new things for him to try. She was wanting to try to show him how to empty his own leg bag and he said while they were in the "potty" leaning trying to reach it he felt a 'horrible' pain in his bladder area, he said it hurt bad enough to freak him out and insisted she set him up straight. Apparently it scared because he said he had to apologize to her for freaking out but he had never felt that pain before and wasn't aware he could feel that kind of pain in that area. He goes back in the morning to discuss his meds with the nurse so we're going to ask her opinion.
He seemd to get better so OT worked with him on some new things that work his arms, upper trunk area---he said she's brutal and tried to kill him (ha ha) but he's sticking with it all and working hard. She loosened his binder and he's been doing well with his blood pressure so far. I checked it at 9:30 and it was 118/63 with P 92--that's pretty good to make it 6 hours without the binder---this is a big thing, means he is working towards a stronger diaphragm and lung function and everyone's dream to be able to function without something helping them to breathe.
Nothing new to report as for progress or improvements. The last two days have basically been re-evaluating what we already new fromt he inpatient side of things.
Hope tomorrow brings more of a routine and strengthening and such----also brings that boy of his officially turning 4 years old, where did the time go??!!!!
Love you all, appreciate you all and continue to pray---thanking God for all of you!!!!
Well, Justin finally made it to bed around 1am this morning---nothing wrong, he just found himself intrigued with the stories on the history channel and kept on going until he finally realized that mama can't go to sleep until he does. Shower done and bowel program and it was off to bed.
4a.m. rolled around quick for his turning (and no accidental leaking with his bed bag, yippee) then it was alarm time to get up for a new day. Things went smoother this morning and we even had 20 minutes to spare before his 9am start time.
Met with the nurse for the outpatient program which was basic Q&A with some suggestions; she's scheduling Justin to meet with Dr. Lin (new doc who watches over the day program patients). It was PT time with Marta (I think she's Russian--don't always understand her) but we "proned" Justin--which is basically laying him on the mat on his stomach--she showed him some exercises to do laying that way and basically said "see you later", got mine and Justin's attention so we were all "see you later??", she asked if I could roll him back over and get him back in the chair, which I can, so she left us to do his arm exercises and get him on his way to the next person.
He had Wonderful Wayne next--psychiatrist--who actually thinks we're okay people, even with our quirks and Justin's sarcastic sense of humor, go figure--we may actually be normal (LOL).
It was TR time next which was full of the game RummiKub---fun game but was designed to work fine motor skills--the three players there all have difficulties using their hands so it was interesting to see them all trying so hard while still enjoying the game. There was some frustration with Justin not being able to grasp (they are like dominoes) but he relaxed with it and seemed to come around (his friend Sam was in there and they are a hoot when together).
OT worked with him next and tried some new things for him to try. She was wanting to try to show him how to empty his own leg bag and he said while they were in the "potty" leaning trying to reach it he felt a 'horrible' pain in his bladder area, he said it hurt bad enough to freak him out and insisted she set him up straight. Apparently it scared because he said he had to apologize to her for freaking out but he had never felt that pain before and wasn't aware he could feel that kind of pain in that area. He goes back in the morning to discuss his meds with the nurse so we're going to ask her opinion.
He seemd to get better so OT worked with him on some new things that work his arms, upper trunk area---he said she's brutal and tried to kill him (ha ha) but he's sticking with it all and working hard. She loosened his binder and he's been doing well with his blood pressure so far. I checked it at 9:30 and it was 118/63 with P 92--that's pretty good to make it 6 hours without the binder---this is a big thing, means he is working towards a stronger diaphragm and lung function and everyone's dream to be able to function without something helping them to breathe.
Nothing new to report as for progress or improvements. The last two days have basically been re-evaluating what we already new fromt he inpatient side of things.
Hope tomorrow brings more of a routine and strengthening and such----also brings that boy of his officially turning 4 years old, where did the time go??!!!!
Love you all, appreciate you all and continue to pray---thanking God for all of you!!!!
Tuesday, October 13, 2009
Day 2
Started the morning with a 1:15am request to turn Justin; wasn't time yet but he said he could feel the pressure from laying that way for two hours, so he was turned. By 4:00 he was ready to turn again and by alarm clock time at 6:30, I let him sleep while I showered then got him up and raring to go.
We met with his new outpatient case manager who gave us the usual orientation speech and tour and he met with some of his therapy team. One is in Canada on vacation. Those we met seemed nice and gave Justin a feel that they would be beneficial but with good personalities to interact with Justin (not the cut & dry variety or Augusta attitude type---by the way, we were informed by our new case manager that a team from the Augusta VA are to visit the Shepherd Center next week, maybe they will learn some better techniques and will actually use them).
After orientation, it was "stretch time with family" so I spent an hour working on Justin's legs. He's still got some serious spasms going. We did lunch and then it was back to PT/OT. OT Darci was impressed with his improved balance and upper body strength. She gave him some "terrible threes" exercises he can do 2 - 3 times per day on his own that will help strengthen his arm and shoulder muscles and he can do them on his own. He was able to express some goals and she offered up a few of her own ideas. Hopefully he's on the right path with this program.
We had heard from several here that the day program is nothing like inpatient therapy and they were disappointed how "relaxed" it seemed compared to the intense workouts inpatient. Maybe Justin's goals and motivation will push them and himself.
He has an appointment with the nurse in the morning who suggested he also see Dr. Lin based on a few issues we had questions about. They are also supposed to be scheduling a Eurodynamics test which will help determine the current status of his bladder and kidneys.
Mostly paperwork and linen cleaning today. Tomorrow really starts the workouts and family training and beginning of what improvements can Justin possibly gain.
Will keep you all updated and thank you all so much for your help, support, encouragement, prayers and yes Ms. Henri---for being the wonderful, wonderful friends that you all are!!!!
We met with his new outpatient case manager who gave us the usual orientation speech and tour and he met with some of his therapy team. One is in Canada on vacation. Those we met seemed nice and gave Justin a feel that they would be beneficial but with good personalities to interact with Justin (not the cut & dry variety or Augusta attitude type---by the way, we were informed by our new case manager that a team from the Augusta VA are to visit the Shepherd Center next week, maybe they will learn some better techniques and will actually use them).
After orientation, it was "stretch time with family" so I spent an hour working on Justin's legs. He's still got some serious spasms going. We did lunch and then it was back to PT/OT. OT Darci was impressed with his improved balance and upper body strength. She gave him some "terrible threes" exercises he can do 2 - 3 times per day on his own that will help strengthen his arm and shoulder muscles and he can do them on his own. He was able to express some goals and she offered up a few of her own ideas. Hopefully he's on the right path with this program.
We had heard from several here that the day program is nothing like inpatient therapy and they were disappointed how "relaxed" it seemed compared to the intense workouts inpatient. Maybe Justin's goals and motivation will push them and himself.
He has an appointment with the nurse in the morning who suggested he also see Dr. Lin based on a few issues we had questions about. They are also supposed to be scheduling a Eurodynamics test which will help determine the current status of his bladder and kidneys.
Mostly paperwork and linen cleaning today. Tomorrow really starts the workouts and family training and beginning of what improvements can Justin possibly gain.
Will keep you all updated and thank you all so much for your help, support, encouragement, prayers and yes Ms. Henri---for being the wonderful, wonderful friends that you all are!!!!
Monday, October 12, 2009
Day Program--Day 1
I should have known when I woke up to storms in Atlanta that today was going to be interesting.
Got to Justin's room around 8:15, not really knowing what to expect. I found him dozing and he advised they were coming in around 9 to get him up. About 8:30 Queen Bee (Barb--case manager) showed up with some prescriptions I would need to get for Justin. Shortly thereafter the nurses came in to get him dressed and out of bed. By 9:30 his head nurse was in there telling me to load up everything that had been opened because they were ours now. She went to get us a few boxes of gloves and some more condom catheters.
As I was loading the cart she brought to me, she advised that she would come back with discharge papers and would call QB back down to go over some more details.
That fast Justin was being discharged from inpatient and inducted into the Day Program. Of course, I was clueless as to what to do. We did our discharge, asked about some equipment the VA sent with us and were advised even though Justin can't use them, to keep them since they were VA issue and needed to be returned to them when his equipment they ordered comes in.
We got him back to a room that was a mess; I hadn't quite had a chance to separate out and coordinate the supplies we already had and here we were showing up with more pillows, more gloves and more equipment.
As we decided to do lunch so I could hide Justin in the hall of 2nd floor while I went to get his prescriptions filled, we found his cath had leaked and he was soaked. We had NO lift in the room. We tried a manual board transfer but I was nervous for having never done one yet and the bed was a bit too high to the power chair and wouldn't go down any further. SO, we got him organized again in the power chair, grabbed some supplies and clean clothes and headed back to 2nd floor for help. We found Beth (just gotta love her, PT therapist) who said she would check into things; in the meanwhile, we were seen by Erin-day program manager- who called housing manager and asked for a manual lift to be brought to our housing room.
So, we strolled back over to housing, got the lift and shower chair, got him in bed, cleaned up, changed and ready to roll back over for some lunch.
Now it's 1:30--got him fed and he found himselft a quiet spot in his favorite 2nd floor hall. Did I mention that it was storming here today.
So 2:15 I head to CVS (here I go with free advertisement again--ha) for prescriptions and other supplies and found Justin comfortable in his spot around 3. By this time, mom's thinking about needing a break but no such luck.
We headed back to the room for some serious organizing of supplies, equipment, had to rearrange the beds so it could accommodate the lift, chair and nightly turning so we get no bed sores. But I did manage to get some supper done which he ate two helpings of and dishes washed. We skipped out on a shower but got his backpack reorganized and ready for his first day in day program, which starts at 8:30 sharp and they want us both there for goals and more learning.
He enjoyed his new episode of House and Lie to Me, did bowel program, got him changed and comfortable in bed and as of 11:30 I think he's finally resting good.
I must say, he did say that the transfers with the manual lift worked out well and agreed that after the day we'd had we needed a break somehow. It's been eye-opening and tiring but we survived it. Thanked God already for that and prayed for continued strength and patience.
What's new with Justin: he's urinating on his own again but I'm concerned with him not being able to tolerate the ICs anymore. Too much sensation and our 10:00 attempt actually felt like his bladder is tightening up in resistance to is. I didn't continue with it only because he said he would talk with the doctor in the morning about it and his head nurse this morning said you typically don't do both ICs and Reflex. I just pray there is no UTI that sets up before we can get this figured out.
He's getting some minor sensation in his feet, has been able to feel the pain from the shots he was getting in his thigh for about a week now and actually said he could feel his thigh muscles reacting to the spasms he was having while I was trying to do some of his leg exercises. Still no function with fingers and hands but with signs in the past we feel there's a good shot of recovery; maybe not this month or this year but such small signs give us hope--like being able to slightly move his thumb and feeling sensations in three of his fingers.
Dad has some contractors lined up tomorrow to advise whether they can assist with the home modifications and how much the price tag will be. Justin was glad to hear; he was starting to get a bit anxious about whether that would be done in time and with the fast pace they do here with the day program, he's probably right to wonder if it can all get done; time sure is seeming to fly by these days!!
We continue to appreciate you all, your comments encourage us and your help, support and prayers keep us going through this all. We thank you all as we do God and continue to pray for us all for the many blessings you all deserve!!!
Got to Justin's room around 8:15, not really knowing what to expect. I found him dozing and he advised they were coming in around 9 to get him up. About 8:30 Queen Bee (Barb--case manager) showed up with some prescriptions I would need to get for Justin. Shortly thereafter the nurses came in to get him dressed and out of bed. By 9:30 his head nurse was in there telling me to load up everything that had been opened because they were ours now. She went to get us a few boxes of gloves and some more condom catheters.
As I was loading the cart she brought to me, she advised that she would come back with discharge papers and would call QB back down to go over some more details.
That fast Justin was being discharged from inpatient and inducted into the Day Program. Of course, I was clueless as to what to do. We did our discharge, asked about some equipment the VA sent with us and were advised even though Justin can't use them, to keep them since they were VA issue and needed to be returned to them when his equipment they ordered comes in.
We got him back to a room that was a mess; I hadn't quite had a chance to separate out and coordinate the supplies we already had and here we were showing up with more pillows, more gloves and more equipment.
As we decided to do lunch so I could hide Justin in the hall of 2nd floor while I went to get his prescriptions filled, we found his cath had leaked and he was soaked. We had NO lift in the room. We tried a manual board transfer but I was nervous for having never done one yet and the bed was a bit too high to the power chair and wouldn't go down any further. SO, we got him organized again in the power chair, grabbed some supplies and clean clothes and headed back to 2nd floor for help. We found Beth (just gotta love her, PT therapist) who said she would check into things; in the meanwhile, we were seen by Erin-day program manager- who called housing manager and asked for a manual lift to be brought to our housing room.
So, we strolled back over to housing, got the lift and shower chair, got him in bed, cleaned up, changed and ready to roll back over for some lunch.
Now it's 1:30--got him fed and he found himselft a quiet spot in his favorite 2nd floor hall. Did I mention that it was storming here today.
So 2:15 I head to CVS (here I go with free advertisement again--ha) for prescriptions and other supplies and found Justin comfortable in his spot around 3. By this time, mom's thinking about needing a break but no such luck.
We headed back to the room for some serious organizing of supplies, equipment, had to rearrange the beds so it could accommodate the lift, chair and nightly turning so we get no bed sores. But I did manage to get some supper done which he ate two helpings of and dishes washed. We skipped out on a shower but got his backpack reorganized and ready for his first day in day program, which starts at 8:30 sharp and they want us both there for goals and more learning.
He enjoyed his new episode of House and Lie to Me, did bowel program, got him changed and comfortable in bed and as of 11:30 I think he's finally resting good.
I must say, he did say that the transfers with the manual lift worked out well and agreed that after the day we'd had we needed a break somehow. It's been eye-opening and tiring but we survived it. Thanked God already for that and prayed for continued strength and patience.
What's new with Justin: he's urinating on his own again but I'm concerned with him not being able to tolerate the ICs anymore. Too much sensation and our 10:00 attempt actually felt like his bladder is tightening up in resistance to is. I didn't continue with it only because he said he would talk with the doctor in the morning about it and his head nurse this morning said you typically don't do both ICs and Reflex. I just pray there is no UTI that sets up before we can get this figured out.
He's getting some minor sensation in his feet, has been able to feel the pain from the shots he was getting in his thigh for about a week now and actually said he could feel his thigh muscles reacting to the spasms he was having while I was trying to do some of his leg exercises. Still no function with fingers and hands but with signs in the past we feel there's a good shot of recovery; maybe not this month or this year but such small signs give us hope--like being able to slightly move his thumb and feeling sensations in three of his fingers.
Dad has some contractors lined up tomorrow to advise whether they can assist with the home modifications and how much the price tag will be. Justin was glad to hear; he was starting to get a bit anxious about whether that would be done in time and with the fast pace they do here with the day program, he's probably right to wonder if it can all get done; time sure is seeming to fly by these days!!
We continue to appreciate you all, your comments encourage us and your help, support and prayers keep us going through this all. We thank you all as we do God and continue to pray for us all for the many blessings you all deserve!!!
New Chapter
Justin had a good weekend. Temp is getting regulated again and his BP is starting to shows signs of stabilizing. He is starting to get more and more sensations back; however, no functionality progress with those sensations. It can be frustrating to him but he seems to be trying real hard to have some patience. He is just tickled to be back here and is ready to work double to regain what he lost. I continue to pray that the day program will help with what he lost and add to it.
Dad, sis and baby left out last night to head home so it's me and him to conquer the new--he should come over to housing either later tonight or tomorrow. If I remember others, he should be here tonight so that he starts day program at 9 in the morning. This is scary yet exciting at the same time; lots of anxiety of making sure we do things right and continued hope for improvement and recovery.
It's rainy, rainy here today and I'm about to head up there to see what's expected of us. We thank you all for your support and I'll update again later.
Hey, by tonight Justin may be able to input his own thoughts into all of this................
Dad, sis and baby left out last night to head home so it's me and him to conquer the new--he should come over to housing either later tonight or tomorrow. If I remember others, he should be here tonight so that he starts day program at 9 in the morning. This is scary yet exciting at the same time; lots of anxiety of making sure we do things right and continued hope for improvement and recovery.
It's rainy, rainy here today and I'm about to head up there to see what's expected of us. We thank you all for your support and I'll update again later.
Hey, by tonight Justin may be able to input his own thoughts into all of this................
Friday, October 9, 2009
Atlanta Style......
First full day back and it's been a busy one.
We would like to thank each and everyone of you for the prayers, concerns, comments, encouragement and down-right anger that saw us through the last 3 weeks.
We have found that Justin managed to lose almost 20 pounds in the three weeks he was at VA and lost a lot of his muscle strength. PT/OT worked with him all day and ran tests to confirm he has had a set back. They are, however, encouraged with his determination and some return of sensations so everyone is confident he can come back while in the day program (which begins Tuesday morning).
Justin knew that he had lost of what he had gained in his first 7 weeks here and knows he will have to work extra hard if he wants to surpass the level he was gone prior to VA. That was a huge part of his fear being at the VA was losing everything he had worked so hard for. Now, he will have to find the strength to work double hard to get back what was lost and gain more.
What we know thanks to Shepherd---he has sensation in his left foot; basically he can feel a Q-tip stroke and a pin poke, he just cannot distinguish between a dull poke vs. a sharp poke. They cannot list him as a "yes" because of not being able to differentiate but continue to be amazed at what he does have. He also has sensation that is a T4 level, well below the level of injury. He can tell when his bladder is full and when he gets relieved by his IC and has started to reflex again but just small amounts--no more than 50 cc but that is lots better than the bone-dry he was doing for 4 days in Augusta.
Everyone here welcomed Justin back with smiles and kindness. He has returned to himself in spirit and personality. Dad left him sitting in the "garden" enjoying the wonderful night view; he said it was awesome down there. I thought he had seen it during the night time but he said not this late at night, he's loving it. And I'm sure knowing where he came from this is like a slice of Heaven to him right now.
He has some movement in both thumbs but not enough that Doc will change his Asia; they told him that they would continue to watch them for further developments. He was even allowed a push-pass and was able to visit the local CVS to stock up on junk. And Yes, Preston was allowed on the floor which meant he could be with Justin all day. He helped Justin play Taboo at TR time and ate supper with him in his room tonight. Of course, like father-like son, Preston had the nurses stumbling over themselves bringing him pudding and grape juice......LOL!!!
We qualified for housing again, so no more hotel expense---thanking God big time for that one. 21 days in Augusta----I definitely do not want to see another hotel room for a while and I only spent 17 of those 21 there, Scotty hasn't been home in a month. He hopes to get back next week and get started on getting the truck running and the construction started for the home modifications. Not sure how long day-program will last, all we know right now is 4-6 weeks.
Just seeing Justin's spirits up and the reaction when he returned here lifts all of ours so we know he will move forward in all ways possible. We know this has come with the help, love, prayers and support from you all.
I've probably forgotten something and will fill it in tomorrow as they come to me. It has been a long 2 days and at 8:40 pm EST we are exhausted. Gonna try to get 'little man' to sleep and see if we can do this all over again tomorrow. Justin does an 8:30 PT then of course he'll spend the rest of the day waiting for that much talked about LSU-FL game (Go Tigers!!!!).
Love you all and appreciate everything you ALL have done for us, hope to continue to see progress and hope to see everyone soon!!!!!
We would like to thank each and everyone of you for the prayers, concerns, comments, encouragement and down-right anger that saw us through the last 3 weeks.
We have found that Justin managed to lose almost 20 pounds in the three weeks he was at VA and lost a lot of his muscle strength. PT/OT worked with him all day and ran tests to confirm he has had a set back. They are, however, encouraged with his determination and some return of sensations so everyone is confident he can come back while in the day program (which begins Tuesday morning).
Justin knew that he had lost of what he had gained in his first 7 weeks here and knows he will have to work extra hard if he wants to surpass the level he was gone prior to VA. That was a huge part of his fear being at the VA was losing everything he had worked so hard for. Now, he will have to find the strength to work double hard to get back what was lost and gain more.
What we know thanks to Shepherd---he has sensation in his left foot; basically he can feel a Q-tip stroke and a pin poke, he just cannot distinguish between a dull poke vs. a sharp poke. They cannot list him as a "yes" because of not being able to differentiate but continue to be amazed at what he does have. He also has sensation that is a T4 level, well below the level of injury. He can tell when his bladder is full and when he gets relieved by his IC and has started to reflex again but just small amounts--no more than 50 cc but that is lots better than the bone-dry he was doing for 4 days in Augusta.
Everyone here welcomed Justin back with smiles and kindness. He has returned to himself in spirit and personality. Dad left him sitting in the "garden" enjoying the wonderful night view; he said it was awesome down there. I thought he had seen it during the night time but he said not this late at night, he's loving it. And I'm sure knowing where he came from this is like a slice of Heaven to him right now.
He has some movement in both thumbs but not enough that Doc will change his Asia; they told him that they would continue to watch them for further developments. He was even allowed a push-pass and was able to visit the local CVS to stock up on junk. And Yes, Preston was allowed on the floor which meant he could be with Justin all day. He helped Justin play Taboo at TR time and ate supper with him in his room tonight. Of course, like father-like son, Preston had the nurses stumbling over themselves bringing him pudding and grape juice......LOL!!!
We qualified for housing again, so no more hotel expense---thanking God big time for that one. 21 days in Augusta----I definitely do not want to see another hotel room for a while and I only spent 17 of those 21 there, Scotty hasn't been home in a month. He hopes to get back next week and get started on getting the truck running and the construction started for the home modifications. Not sure how long day-program will last, all we know right now is 4-6 weeks.
Just seeing Justin's spirits up and the reaction when he returned here lifts all of ours so we know he will move forward in all ways possible. We know this has come with the help, love, prayers and support from you all.
I've probably forgotten something and will fill it in tomorrow as they come to me. It has been a long 2 days and at 8:40 pm EST we are exhausted. Gonna try to get 'little man' to sleep and see if we can do this all over again tomorrow. Justin does an 8:30 PT then of course he'll spend the rest of the day waiting for that much talked about LSU-FL game (Go Tigers!!!!).
Love you all and appreciate everything you ALL have done for us, hope to continue to see progress and hope to see everyone soon!!!!!
Intermission
Hello Everyone, this is dad and I've just got the computer set up. Judy will do an update later but wanted everyone to know we are back at Shepherd. (thank god) Things really do move fast here and they are already preparing Justin for the Day Program starting Monday. I have finally got everything unloaded and in the process of setting up house.
Justin is in room 209 for this weekend but will come to apt. 205 for the Day Program where we will provide his care 24/7. He will continue to due pt and ot during the day next door at the hospital but will live in the room for the duration of the Day Program. Everyone stopped what they were doing (reasonably) to come and welcome Justin back with open arms, hugs and kisses. They also congratulated him on surviving and completing the VA portion of his journey.
Judy will give a more acute update later as she is so much better with words than I am. I do wish to thank all who follow and pray for Justin on his recovery. May the Lord follow and bless each and everyone of you everyday.
Thank You,
Dad
Justin is in room 209 for this weekend but will come to apt. 205 for the Day Program where we will provide his care 24/7. He will continue to due pt and ot during the day next door at the hospital but will live in the room for the duration of the Day Program. Everyone stopped what they were doing (reasonably) to come and welcome Justin back with open arms, hugs and kisses. They also congratulated him on surviving and completing the VA portion of his journey.
Judy will give a more acute update later as she is so much better with words than I am. I do wish to thank all who follow and pray for Justin on his recovery. May the Lord follow and bless each and everyone of you everyday.
Thank You,
Dad
Wednesday, October 7, 2009
Tribulations......
Everybody about ready for some wonderful news??
We are going to be back in Atlanta by lunch time Thursday YIPPEEEEE...................
Colonel Renta said yes if both doctors would agree, Tricare was waiting to give an authorization number when the VA called and I think they finally decided that Justin had outgrown his welcome here in Augusta.
What we know right now is Shepherd is taking him as inpatient. Will check on his medical side to make sure he gets better and if okay, he will start the day program next Wednesday.
As always, Mama Hen, you have been right all along about how fast Shepherd works to get the best care done for the patient. We were truly blessed to have gone there first to know what care really means. I cannot imagine people that come here first unaware of the right way it should be done.
Thank God and thank you all for holding us strong through all of this!!!
We are going to be back in Atlanta by lunch time Thursday YIPPEEEEE...................
Colonel Renta said yes if both doctors would agree, Tricare was waiting to give an authorization number when the VA called and I think they finally decided that Justin had outgrown his welcome here in Augusta.
What we know right now is Shepherd is taking him as inpatient. Will check on his medical side to make sure he gets better and if okay, he will start the day program next Wednesday.
As always, Mama Hen, you have been right all along about how fast Shepherd works to get the best care done for the patient. We were truly blessed to have gone there first to know what care really means. I cannot imagine people that come here first unaware of the right way it should be done.
Thank God and thank you all for holding us strong through all of this!!!
Tuesday, October 6, 2009
The Waiting Game
Well---seems we go day-to-day with a new version of who is responsible for what.
As of 1:30a.m. CST I had sent an email to the Governor of Georgia, Sonny Perdue and also to the email address online for Sen. McCain---not sure what will come of either.
By 8:00 a.m. CST we had received a call from Tricare who advised us the final decision now rests in the hands of Colonel (Dr.) Renta at Ft Rucker. Shepherd then called and stated they needed Justin's verbal approval to release documents to the Colonel's office so she got the impression that they were working on that decision. It is now 2:11pm CST and Danielle is in a conference and Ms. Smith is now out of the office so we continue to wait on if a decision has been made yet. Do not have a clue if it will be a yes answer but were told the transfer can happen within 24 hours if we get a yes.
We found Justin in better spirits but with new sensation---in his private area which now means the ICPs he's having to get 4 times a day are "hurting like He*l" He is seriously considering going back to a foley until someone can figure out what has caused the sensation and the reason he has stopped being able to pee on his own. Hopefully this will be a conversation he will be able to have with our beloved Dr. Bilsky.
He stays cold while he's up in the chair and can't cool off enough when he's laying down. Oh, they also forgot to rehook his seatbelt after the IC so he was running the halls without his safety latch on. Good thing he wanted a blanket, that's when we found it wasn't on.
I don't think this place likes us anymore which makes us wonder why they aren't trying hard to get us out of here (lol)!!
For all of you that have continued to donate time and money as well as support and advice, we will never be able to repay our gratitude. It is a true blessing to have all of you in our lives, without you ALL this journey would have taken its toll on us in so many ways!!
We will update as soon as we know something, love you all!!
As of 1:30a.m. CST I had sent an email to the Governor of Georgia, Sonny Perdue and also to the email address online for Sen. McCain---not sure what will come of either.
By 8:00 a.m. CST we had received a call from Tricare who advised us the final decision now rests in the hands of Colonel (Dr.) Renta at Ft Rucker. Shepherd then called and stated they needed Justin's verbal approval to release documents to the Colonel's office so she got the impression that they were working on that decision. It is now 2:11pm CST and Danielle is in a conference and Ms. Smith is now out of the office so we continue to wait on if a decision has been made yet. Do not have a clue if it will be a yes answer but were told the transfer can happen within 24 hours if we get a yes.
We found Justin in better spirits but with new sensation---in his private area which now means the ICPs he's having to get 4 times a day are "hurting like He*l" He is seriously considering going back to a foley until someone can figure out what has caused the sensation and the reason he has stopped being able to pee on his own. Hopefully this will be a conversation he will be able to have with our beloved Dr. Bilsky.
He stays cold while he's up in the chair and can't cool off enough when he's laying down. Oh, they also forgot to rehook his seatbelt after the IC so he was running the halls without his safety latch on. Good thing he wanted a blanket, that's when we found it wasn't on.
I don't think this place likes us anymore which makes us wonder why they aren't trying hard to get us out of here (lol)!!
For all of you that have continued to donate time and money as well as support and advice, we will never be able to repay our gratitude. It is a true blessing to have all of you in our lives, without you ALL this journey would have taken its toll on us in so many ways!!
We will update as soon as we know something, love you all!!
Monday, October 5, 2009
Negotiations
First to report is Justin texted to let us know that his blood pressure bottomed out while he was driving his wheelchair to the gym. Was due to his binder not being put on tight enough. Then found out it elevated and they determined it was because he had too much urine in his bladder, ICP showed 400 cc, even though Justin and nurse both said he wet himself again so some of it would have gone into the leg bag. Haven't quite figured out why he voids some of it but having difficulty all of a sudden not being able to empty it all out. But they did decide they would ICP him every 6 hours now, about time.
We saw him for lunch and he seemed more attentive, especially with Preston. Left him to do some more classes, PT/OT.
We spent most of the day calling every number we had to try to understand what is going on and everyone seems to have the same answer---they are waiting for the VA to refer him to Shepherd. First I was told by Danielle that they don't give referrals but when pressed harder I was advised that they have never had to give one because the military usually takes care of this kind of stuff.
When pressed even harder, she said she would speak with a doctor to see what needed to be done to get what was needed. Right now, Shepherd is sitting on go waiting for them to transfer Justin, day program has said they will take him but need him to go through someone who will be able to have a doctor sign off that medically he is ready for day program--they don't care if that comes from VA or from a Shepherd doctor, they just need him to complete inpatient then transfer as a release to them AND Tricare did confirm they are a go to pay for all of this, THEY are just waiting on the VA to authorize him over to Shepherd.
As of 4:30, the VA has indicated they will not refer him because they feel they can accomodate for his needs. They will not say that he NEEDS to go to Shepherd. So I basically left the conversation with a short reply---find someone who will give a Yes answer and do it within 2 days or I will find someone outside of the establishment that will make it happen. It goes to the Chief of Staff tomorrow who we've been told will take at least 2 weeks even if he says yes and I said unacceptable.
Dad called the Director of VA and left a voicemail basically saying she needed to sign the papers to release Justin this week or it goes public. Not sure how much that will do but we're grasping at anything right now.
I've gotten about 4 phone numbers to local TV channels and am thinking about calling to see what their perspective would be, help us or hinder us and I've got to do some laptop work to see if I can locate a Georgia Governor email to see if we can get someone to get him out of here.
VA is trying to tell me that Colonel Renta (??spelling) at Ft Rucker carries final say but Tricare is telling me that VA is the hold up. Tomorrow hopefully will finalize something, anything so we know how to better arm ourselves if we can't get a transfer this week.
Justin is strong and continues to know how much support is behind him. My fear is what else can go wrong while waiting for this to come to an end and how long will it take him to regain all that he's lost by being here.
As always, we continue to respect each of you, admire you for your determination and guidance, and appreciate you for being our strength and support.
May the Good Lord see us through this and bless us once again!!
We saw him for lunch and he seemed more attentive, especially with Preston. Left him to do some more classes, PT/OT.
We spent most of the day calling every number we had to try to understand what is going on and everyone seems to have the same answer---they are waiting for the VA to refer him to Shepherd. First I was told by Danielle that they don't give referrals but when pressed harder I was advised that they have never had to give one because the military usually takes care of this kind of stuff.
When pressed even harder, she said she would speak with a doctor to see what needed to be done to get what was needed. Right now, Shepherd is sitting on go waiting for them to transfer Justin, day program has said they will take him but need him to go through someone who will be able to have a doctor sign off that medically he is ready for day program--they don't care if that comes from VA or from a Shepherd doctor, they just need him to complete inpatient then transfer as a release to them AND Tricare did confirm they are a go to pay for all of this, THEY are just waiting on the VA to authorize him over to Shepherd.
As of 4:30, the VA has indicated they will not refer him because they feel they can accomodate for his needs. They will not say that he NEEDS to go to Shepherd. So I basically left the conversation with a short reply---find someone who will give a Yes answer and do it within 2 days or I will find someone outside of the establishment that will make it happen. It goes to the Chief of Staff tomorrow who we've been told will take at least 2 weeks even if he says yes and I said unacceptable.
Dad called the Director of VA and left a voicemail basically saying she needed to sign the papers to release Justin this week or it goes public. Not sure how much that will do but we're grasping at anything right now.
I've gotten about 4 phone numbers to local TV channels and am thinking about calling to see what their perspective would be, help us or hinder us and I've got to do some laptop work to see if I can locate a Georgia Governor email to see if we can get someone to get him out of here.
VA is trying to tell me that Colonel Renta (??spelling) at Ft Rucker carries final say but Tricare is telling me that VA is the hold up. Tomorrow hopefully will finalize something, anything so we know how to better arm ourselves if we can't get a transfer this week.
Justin is strong and continues to know how much support is behind him. My fear is what else can go wrong while waiting for this to come to an end and how long will it take him to regain all that he's lost by being here.
As always, we continue to respect each of you, admire you for your determination and guidance, and appreciate you for being our strength and support.
May the Good Lord see us through this and bless us once again!!
Sunday, October 4, 2009
Heavy hearts
Where are the hidden cameras that busted ACORN when you need them?? Surely if I am starting to believe there is no way things we've seen can really happen, others must be wondering themselves how this goes on--especially in America.
We now have Preston back so we were a bit late this morning for visitation. Of course the flu scare is everywhere, so we were quickly informed that he cannot be on the unit and were advised to take him back to the dayroom, slash food area, slash TV section. Robyn chose to check on Justin and I would watch Pretzel.
Soon after, she came in to advise that Justin wanted me because he had been asking for 45 minutes to get up (this was at 11:15) and no one had come. Because I spent so much time at Shepherd and here being trained, I felt it would be no problem getting him dressed and up in his chair.
First problem--I found traces of bowel on his absorben pad (he had no britches on), so I wiped him only to get more traces on the peri-cloth. After a second wipe, his pad for his skin sore came off with lots more bowel stuff on it. After I turned him even more, I found two more red areas on his buttock cheeks which caused alarm---made me angry but I suppressed my emotions. I requested the nurse's desk locate his nurse and come inspect the problems.
I was advised that the bowel care team cannot tell if there is anything getting under the pad area and they do not change it out nightly and Justin was then advised he may want to ask the tech each night to check the area for cleanliness---if soiled, then a nurse would need to be called in to change the padding. They can't make up their minds if they want Justin's input or if they want to argue when he inputs. I also stood by and watched a nurse (or tech, not sure what her role is) put a condom cath on a patient that was laying on his side with his knees crossed and pulling pubic hair out as she was trying to get it in place.
Mama Hen---I didn't argue, I didn't input, I didn't give attitude AND I FEEL ASHAMED for standing there watching them act in a manner they thought was appropriate and would do the job right. I did, however, ask if they intended to put pads on his bottom area seeing as it was red, even though it "blanched" and she said she would since Justin insisted he wanted up and I stated I would feel better knowing it was there. They had to use tape to get the pads to stay (of course, his bottom has gotten extremely hairy).
His binder still wreaked of urine, thank God I had brought an extra one and his sling for the houer (spelling) that lifts him out of bed is yellow with urine stains. I searched everywhere in that 4-man room until I found another one that didn't smell and took both back tonight for washing. He did appear to have what they are calling a heat rash. Hadn't seen this before and of course had to answer things like change in food intake or laundry detergent--No and No but it started to ease off as the air got to it and the shirt was lifted. Justin claims it's from his hands/arms laying the way they were. Don't know!!
He was then able to visit with us and seemed to try hard to find enthusiasm and playfulness with Preston, yet continues to be "blah".
We left around 3 so Robyn could head home and Preston could get some cartoons and rest. I returned around 5 for supper time. His appetite was good but conversation quiet. He is still not urinating on his own (or so I thought). I feel bad with that one too. When they came in to bladder scan him, scan said he had almost 600 cc but his cath had come off completely and he was soiled. Which basically told me he had urinated on his own, maybe not as well as he needed to but he had. What bothers me is that they've known for 2 days that he's not emptying into his leg bag but we had to be the ones to ask them if they felt he needed another IC since he had not had one since that morning---12 hours later; and holding 600 cc can cause UTinfections!!!
I left him with this statement he told to me-----if no one can help me tomorrow, come Wednesday--if this IV comes out, tell daddy to take me home; I can't stay here anymore!!
I know Justin went to a bar on July 2nd. He wasn't the only one there; he socialized and played pool and made the unfortunate mistake of getting in a car to go home. I also know that he was stopped at a military gate and that is when life changed. He was allowed onto post and 2 miles later our journey began!!! I JUST WANT HELP GETTING HIM OUT OF THIS PLACE!!!!!
I have tried dealing with this and thought I was handling it well until we got here!!! No person here deserves to have to put up with the care that goes on here. Justin has told us stories of one night a nurse came in the room when Mr. Bishop called (a nice elderly man) and this nurse confronted him with questions about how she heard he had been talking to others of how he didn't like her, the response Mr. Bishop got was "I was coming to bring your pain medicine but I think I'll have to wait on that". This same Mr. Bishop also wanted an extra pillow and was told they didn't have anymore, so Justin who couldn't sleep because of this going on in the same room, called out and told the nurses to give him one of his pillows. Two nights ago, a new room-mate, Mr. White--also older---felt so bad about Justin not getting a response from the nurse call he was making, Mr. White called for him and advised that he needed a nurse NOW!!
VA medical reports say they turn him every 2 hours, they say Justin is resistant to their treatment and psychiatrist says it's Justin's fault. How do you fight this???
Thank you all for the support, help and direction. We will continue to update you all!!
With heavy hearts and many prayers......................hoping to see Atlanta before he completely gives up hope!!!
We now have Preston back so we were a bit late this morning for visitation. Of course the flu scare is everywhere, so we were quickly informed that he cannot be on the unit and were advised to take him back to the dayroom, slash food area, slash TV section. Robyn chose to check on Justin and I would watch Pretzel.
Soon after, she came in to advise that Justin wanted me because he had been asking for 45 minutes to get up (this was at 11:15) and no one had come. Because I spent so much time at Shepherd and here being trained, I felt it would be no problem getting him dressed and up in his chair.
First problem--I found traces of bowel on his absorben pad (he had no britches on), so I wiped him only to get more traces on the peri-cloth. After a second wipe, his pad for his skin sore came off with lots more bowel stuff on it. After I turned him even more, I found two more red areas on his buttock cheeks which caused alarm---made me angry but I suppressed my emotions. I requested the nurse's desk locate his nurse and come inspect the problems.
I was advised that the bowel care team cannot tell if there is anything getting under the pad area and they do not change it out nightly and Justin was then advised he may want to ask the tech each night to check the area for cleanliness---if soiled, then a nurse would need to be called in to change the padding. They can't make up their minds if they want Justin's input or if they want to argue when he inputs. I also stood by and watched a nurse (or tech, not sure what her role is) put a condom cath on a patient that was laying on his side with his knees crossed and pulling pubic hair out as she was trying to get it in place.
Mama Hen---I didn't argue, I didn't input, I didn't give attitude AND I FEEL ASHAMED for standing there watching them act in a manner they thought was appropriate and would do the job right. I did, however, ask if they intended to put pads on his bottom area seeing as it was red, even though it "blanched" and she said she would since Justin insisted he wanted up and I stated I would feel better knowing it was there. They had to use tape to get the pads to stay (of course, his bottom has gotten extremely hairy).
His binder still wreaked of urine, thank God I had brought an extra one and his sling for the houer (spelling) that lifts him out of bed is yellow with urine stains. I searched everywhere in that 4-man room until I found another one that didn't smell and took both back tonight for washing. He did appear to have what they are calling a heat rash. Hadn't seen this before and of course had to answer things like change in food intake or laundry detergent--No and No but it started to ease off as the air got to it and the shirt was lifted. Justin claims it's from his hands/arms laying the way they were. Don't know!!
He was then able to visit with us and seemed to try hard to find enthusiasm and playfulness with Preston, yet continues to be "blah".
We left around 3 so Robyn could head home and Preston could get some cartoons and rest. I returned around 5 for supper time. His appetite was good but conversation quiet. He is still not urinating on his own (or so I thought). I feel bad with that one too. When they came in to bladder scan him, scan said he had almost 600 cc but his cath had come off completely and he was soiled. Which basically told me he had urinated on his own, maybe not as well as he needed to but he had. What bothers me is that they've known for 2 days that he's not emptying into his leg bag but we had to be the ones to ask them if they felt he needed another IC since he had not had one since that morning---12 hours later; and holding 600 cc can cause UTinfections!!!
I left him with this statement he told to me-----if no one can help me tomorrow, come Wednesday--if this IV comes out, tell daddy to take me home; I can't stay here anymore!!
I know Justin went to a bar on July 2nd. He wasn't the only one there; he socialized and played pool and made the unfortunate mistake of getting in a car to go home. I also know that he was stopped at a military gate and that is when life changed. He was allowed onto post and 2 miles later our journey began!!! I JUST WANT HELP GETTING HIM OUT OF THIS PLACE!!!!!
I have tried dealing with this and thought I was handling it well until we got here!!! No person here deserves to have to put up with the care that goes on here. Justin has told us stories of one night a nurse came in the room when Mr. Bishop called (a nice elderly man) and this nurse confronted him with questions about how she heard he had been talking to others of how he didn't like her, the response Mr. Bishop got was "I was coming to bring your pain medicine but I think I'll have to wait on that". This same Mr. Bishop also wanted an extra pillow and was told they didn't have anymore, so Justin who couldn't sleep because of this going on in the same room, called out and told the nurses to give him one of his pillows. Two nights ago, a new room-mate, Mr. White--also older---felt so bad about Justin not getting a response from the nurse call he was making, Mr. White called for him and advised that he needed a nurse NOW!!
VA medical reports say they turn him every 2 hours, they say Justin is resistant to their treatment and psychiatrist says it's Justin's fault. How do you fight this???
Thank you all for the support, help and direction. We will continue to update you all!!
With heavy hearts and many prayers......................hoping to see Atlanta before he completely gives up hope!!!
Friday, October 2, 2009
Another day
Thank you Mama Hen and Ms. Henri---we (I) had not even thought of taking it to congressional levels; had thought of local TV channels (ha). We will check into that.
Got word from Ft Rucker his ordered were renewed even though case manager at Shepherd was told they weren't. We actually have a copy of them now which confirms Tricare continues, good for both Justin and coverage for Preston.
We were also informed that while case manager Danielle did give a referral to Shepherd she told Ft Rucker (for Tricare purposes) that the VA could accommodate Justin just as well as Shepherd. Another run-around and she was not at work today.
Ms. Smith from Ft Rucker also advised me that she still has not received medical records from the VA so that they can try to get a decision made so we asked for them today and actually received it this afternoon----all 300 pages!! Of course, what I've read so far mentioned nothing about the attitudes, lack of care or turning or specific ailments he never had until getting here. Mainly focuses on Justin's lack of cooperation or his unwillingness to share information or capabilities and overall bad attitude towards the VA. You think he has a bad attitude (LOL)!!
Today's report---he still feels blah even though temp was 97.9 and BP came back 123/77 BUT he's not urinating on his own now. They did an IC on him around 2:00 and got 400 cc. As of 8:00 tonight, he still had not urinated on himself or in his leg bag. He didn't drink much this morning but did have 1 1/2 vitamin waters, some hot chocolate and water and still nothing on his own. Another reason for paranoia to set in that another medical set back is about to happen. They've been wanting him on a foley catheter since last Wednesday and also mentioned doing a pic-line (two things he hasn't has since leaving Dothan).
I just don't know anymore and continue to thank you all for your continued support, suggestions, direction and prayers. WE thank you all so much for helping us to help watch out for Justin's best interest.
Got word from Ft Rucker his ordered were renewed even though case manager at Shepherd was told they weren't. We actually have a copy of them now which confirms Tricare continues, good for both Justin and coverage for Preston.
We were also informed that while case manager Danielle did give a referral to Shepherd she told Ft Rucker (for Tricare purposes) that the VA could accommodate Justin just as well as Shepherd. Another run-around and she was not at work today.
Ms. Smith from Ft Rucker also advised me that she still has not received medical records from the VA so that they can try to get a decision made so we asked for them today and actually received it this afternoon----all 300 pages!! Of course, what I've read so far mentioned nothing about the attitudes, lack of care or turning or specific ailments he never had until getting here. Mainly focuses on Justin's lack of cooperation or his unwillingness to share information or capabilities and overall bad attitude towards the VA. You think he has a bad attitude (LOL)!!
Today's report---he still feels blah even though temp was 97.9 and BP came back 123/77 BUT he's not urinating on his own now. They did an IC on him around 2:00 and got 400 cc. As of 8:00 tonight, he still had not urinated on himself or in his leg bag. He didn't drink much this morning but did have 1 1/2 vitamin waters, some hot chocolate and water and still nothing on his own. Another reason for paranoia to set in that another medical set back is about to happen. They've been wanting him on a foley catheter since last Wednesday and also mentioned doing a pic-line (two things he hasn't has since leaving Dothan).
I just don't know anymore and continue to thank you all for your continued support, suggestions, direction and prayers. WE thank you all so much for helping us to help watch out for Justin's best interest.
Thursday, October 1, 2009
Lifetime Movie
I keep telling myself this just isn't happening. This is stuff LMN channel is made of, not reality--
Was running later that usual this morning and found Justin still in bed when I got there at 10. He had some throwing up last night and was still very nauseaus this morning. Every time he tried to sit up he got woosy again.
The nurse in there was trying to give him a new IV line and after two tries still couldn't get one running. Justin got perturbed which gave her an attitude so she said she would get Dr. Rivers to come in and run one. Rivers came in later and said she hasn't ran an IV in years and would prefer to leave it to the nurses who do it everyday.
Justin wasn't feeling any better and remained in bed, dozing off and on. Another male nurse came in later and tried to get the IV line again. After 3 attempts and a smaller needle he managed to get it. After attempt 2 Justin was frustrated again and reminded him that paralyzed people are hyper-sensitive. That guy's attitude seemed to get better. He also explained why he had to use Justin's right arm this time, even though Justin resisted at first. They left the first IV in his left arm in too long and have caused his vein to harden (some S word) that basically means the vein is unuseable now. He said it will not rejuvenate or heal itself. He also mentioned that could be part of why his blood is "septic".
I lost my save, should have known. Had this all written and lost it.
He finally got up around 1:30 and ate a late lunch, Bojangles, and managed to keep it down. I left him in his room around 6:30 after peanut butter crackers and vitamin water. Didn't feel up to supper and said he felt tired and weak. Nurse Dan is on tonight and I feel comfortable with him watching Justin. Hopefully he'll have a better night!! And maybe eat some more....
More bad news, Tuesday they said his orders were renewed and Tricare continued. Today they are saying no to orders and no to Tricare which means NO to Shepherd.
Hard watching your child lose his enthusiasm, sparkle and personality.
We continue to thank you all for prayers, support and encouragement.
Was running later that usual this morning and found Justin still in bed when I got there at 10. He had some throwing up last night and was still very nauseaus this morning. Every time he tried to sit up he got woosy again.
The nurse in there was trying to give him a new IV line and after two tries still couldn't get one running. Justin got perturbed which gave her an attitude so she said she would get Dr. Rivers to come in and run one. Rivers came in later and said she hasn't ran an IV in years and would prefer to leave it to the nurses who do it everyday.
Justin wasn't feeling any better and remained in bed, dozing off and on. Another male nurse came in later and tried to get the IV line again. After 3 attempts and a smaller needle he managed to get it. After attempt 2 Justin was frustrated again and reminded him that paralyzed people are hyper-sensitive. That guy's attitude seemed to get better. He also explained why he had to use Justin's right arm this time, even though Justin resisted at first. They left the first IV in his left arm in too long and have caused his vein to harden (some S word) that basically means the vein is unuseable now. He said it will not rejuvenate or heal itself. He also mentioned that could be part of why his blood is "septic".
I lost my save, should have known. Had this all written and lost it.
He finally got up around 1:30 and ate a late lunch, Bojangles, and managed to keep it down. I left him in his room around 6:30 after peanut butter crackers and vitamin water. Didn't feel up to supper and said he felt tired and weak. Nurse Dan is on tonight and I feel comfortable with him watching Justin. Hopefully he'll have a better night!! And maybe eat some more....
More bad news, Tuesday they said his orders were renewed and Tricare continued. Today they are saying no to orders and no to Tricare which means NO to Shepherd.
Hard watching your child lose his enthusiasm, sparkle and personality.
We continue to thank you all for prayers, support and encouragement.
Wednesday, September 30, 2009
The Siege---Augusta Style
As always, I must start this update with apologies for the delay. I know each of you have been such strength and encouragement to us and sincerely regret keeping you all from more frequent updates.
Monday found us doing our best to complete their training courses and getting updated on his tests (all but the blood work). His murmr was "nothing", his kidneys are odd but the overall picture says they are working super (odd being they claim one test shows something they don't typically see and another shows lower totals they are used to but when the overall picture is looked at---which we're told that the point--overall picture, his kidneys are working perfect).
The infection in his blood came back same as the infection in his bladder and they can't explain how that managed to go from bladder to bloodstream. They in a round-about-way tried to suggest it was possible he came to them with an infection and because they didn't culture him right away, it was able to worsen--result being the infection in the blood stream.
He continues to be on IV antibiotics but is much, much better. He told me last week was BAD. He and dad both crying trying to get through it all and he said he actually was very concerned he was taking a definite turn for the worse.
Mama Hen--we were told yesterday his hemaglobin was at 13.2 first week here and went down to 11.4 last week. They claim it is because of the infection and antibiotics. His platelettes were 138,000 and reduced down to around 114,000--also saying that is due to infection and antibiotics. She suggested putting him on 10ml of something that used to be used for depression but claimed it was now used for "neuropathy" (I think that is was she said was going on with Justin's feeling like parts of his body are on fire). He finally changed his mind today saying he didn't want to take anything that had a label pertaining to depression or anxiety or 'mental' issues. They have indicated they feel he runs a risk of getting another bladder infection which just makes us feel that they are pushing to keep him sick so they can keep him (paranoid I know but it's been a nightmare the last 2 weeks).
Dr. Rivers did, however, say that they will order a CBC (hopefully this week) to check his blood counts again.
During PT his cath came off AGAIN, completely off, so while changing and cleaning I found a small rash around his groin area which hasn't been there and found that his binder was on so tight that it "chorded" his abdomen area. His nurse treated both with some kind of cream and we found out back in the gym---when his blood pressure bottomed out---that she didn't replace the new binder tight enough, which caused him to get nauseaus and almost pass out. They couldn't even read his blood pressue with the machine until they figured out the binder wasn't on right, then it finally came back reading 99/57.
They forced him to swallow lunch fast so they could force him to go to the WalMart outing in a manual chair they PIECED TOGETHER. That wore him out big-time because no one is allowed to help them with anything. So, put him in a chair he struggles with because they refuse to listen to him say what kind of chair he can handle, make him go in public with the fear that his cath will not work again and he'll urinate all over himself and claim this is all for the sake of him becoming independent.
For anyone who thinks it cannot possibly be this bad, please know it is if not worse.
Truthfully, picture yourself sitting in a chair and knowing that you have no balance. Close your eyes and sit in a chair knowing that no one is there to hold you up and you're dizzy and struggling to keep yourself steady in that chair. Now picture someone who is standing, with eyes open and full control of their body telling you to sit up---I can't, yes you can, No I can't, yes you can!! Then you almost fall and that person has to grab you and says--whew, you scared me; you okay?? Did it scare you too, did it frustrate you that you tried telling that person you couldn't do it, did it make you fear that you came close to possibly damaging yourself even more?? This scenario is a small glimpse into the arguments and frustrations.
Help us pull your pants up Justin.....I can't; yes you can, reach down and help us. What part of have no trunk control and no hands do they not understand.
I can't even find a wash rag in his room when I need to clean him. There is no order to where are his catheters or anything else you might need. No towels in the room and because he leaks at least 3 times a day, they have to put an absorbent pad on his chair cushion and I think I've been swiping someone else's because I have no clue who they belong to but I know that I need one so I grab one.
You guys think we're strong---not so much as Justin having to endure this and keeping his sanity. You ask him today, "where we going" and he tells you "crazy".
I know the update doesn't make any of you feel better and it is with sadness we continue to report such dreariness. Thankfully, his fever is down and we are working diligently to get him out of this place.
What I know right now----his case manager Danielle gave a referral to Shepherd today and Shepherd is now working with Tricare to get approval to get him transferred back. We pray that we get that approval!!!!
Soon as we know something, I will update you guys (and I promise I will try my best to make that update as soon as we know something---not a 3 day wait).
We love you guys and thank you all and appreciate everything and so much more that is in our hearts!!!
Monday found us doing our best to complete their training courses and getting updated on his tests (all but the blood work). His murmr was "nothing", his kidneys are odd but the overall picture says they are working super (odd being they claim one test shows something they don't typically see and another shows lower totals they are used to but when the overall picture is looked at---which we're told that the point--overall picture, his kidneys are working perfect).
The infection in his blood came back same as the infection in his bladder and they can't explain how that managed to go from bladder to bloodstream. They in a round-about-way tried to suggest it was possible he came to them with an infection and because they didn't culture him right away, it was able to worsen--result being the infection in the blood stream.
He continues to be on IV antibiotics but is much, much better. He told me last week was BAD. He and dad both crying trying to get through it all and he said he actually was very concerned he was taking a definite turn for the worse.
Mama Hen--we were told yesterday his hemaglobin was at 13.2 first week here and went down to 11.4 last week. They claim it is because of the infection and antibiotics. His platelettes were 138,000 and reduced down to around 114,000--also saying that is due to infection and antibiotics. She suggested putting him on 10ml of something that used to be used for depression but claimed it was now used for "neuropathy" (I think that is was she said was going on with Justin's feeling like parts of his body are on fire). He finally changed his mind today saying he didn't want to take anything that had a label pertaining to depression or anxiety or 'mental' issues. They have indicated they feel he runs a risk of getting another bladder infection which just makes us feel that they are pushing to keep him sick so they can keep him (paranoid I know but it's been a nightmare the last 2 weeks).
Dr. Rivers did, however, say that they will order a CBC (hopefully this week) to check his blood counts again.
During PT his cath came off AGAIN, completely off, so while changing and cleaning I found a small rash around his groin area which hasn't been there and found that his binder was on so tight that it "chorded" his abdomen area. His nurse treated both with some kind of cream and we found out back in the gym---when his blood pressure bottomed out---that she didn't replace the new binder tight enough, which caused him to get nauseaus and almost pass out. They couldn't even read his blood pressue with the machine until they figured out the binder wasn't on right, then it finally came back reading 99/57.
They forced him to swallow lunch fast so they could force him to go to the WalMart outing in a manual chair they PIECED TOGETHER. That wore him out big-time because no one is allowed to help them with anything. So, put him in a chair he struggles with because they refuse to listen to him say what kind of chair he can handle, make him go in public with the fear that his cath will not work again and he'll urinate all over himself and claim this is all for the sake of him becoming independent.
For anyone who thinks it cannot possibly be this bad, please know it is if not worse.
Truthfully, picture yourself sitting in a chair and knowing that you have no balance. Close your eyes and sit in a chair knowing that no one is there to hold you up and you're dizzy and struggling to keep yourself steady in that chair. Now picture someone who is standing, with eyes open and full control of their body telling you to sit up---I can't, yes you can, No I can't, yes you can!! Then you almost fall and that person has to grab you and says--whew, you scared me; you okay?? Did it scare you too, did it frustrate you that you tried telling that person you couldn't do it, did it make you fear that you came close to possibly damaging yourself even more?? This scenario is a small glimpse into the arguments and frustrations.
Help us pull your pants up Justin.....I can't; yes you can, reach down and help us. What part of have no trunk control and no hands do they not understand.
I can't even find a wash rag in his room when I need to clean him. There is no order to where are his catheters or anything else you might need. No towels in the room and because he leaks at least 3 times a day, they have to put an absorbent pad on his chair cushion and I think I've been swiping someone else's because I have no clue who they belong to but I know that I need one so I grab one.
You guys think we're strong---not so much as Justin having to endure this and keeping his sanity. You ask him today, "where we going" and he tells you "crazy".
I know the update doesn't make any of you feel better and it is with sadness we continue to report such dreariness. Thankfully, his fever is down and we are working diligently to get him out of this place.
What I know right now----his case manager Danielle gave a referral to Shepherd today and Shepherd is now working with Tricare to get approval to get him transferred back. We pray that we get that approval!!!!
Soon as we know something, I will update you guys (and I promise I will try my best to make that update as soon as we know something---not a 3 day wait).
We love you guys and thank you all and appreciate everything and so much more that is in our hearts!!!
Sunday, September 27, 2009
11 days in Augusta
Wish I had happy, good, progressive news to report and I guess there is some to be thankful for--the fever has finally broke and has managed to stay below 101.00 for 36 hours.
Other than the few nurses or techs who seem open-minded to listen to us, we continue to run into the attitude that everyone going on is normal and expected and definitely feel resistance to our input or involvement in Justin's recovery or stay at the VA.
What I know right now: his fever reached 104.6 but he was advised that there was no need for concern since a patient can get to 108 before there is a serious need for alarm....hmm, that doesn't sound conforting considering that they had to use fans and pack him in ice to get it down. They couldn't use a cooling blanket because a doctor has to sign off on an order for that. Same with the vaseline lip therapy we wanted yesterday because his lips are dry and cracked for the days with fever--nurses have to have a doctor's order to use that, SO Robyn used some of the Carmex she had in her purse (go figure).
It is believed that Justin started out with a UTI and the infection from that found it's way into his veins of the bladder and spread an infection into his bloodstream. They have also as of Friday morning, ran an Echo on his heart because they claim they are now hearing a "possible murmur" which could be the result of the infection in his blood. He was placed on a broad spectrum antibiotic (which they want him on for 2 more weeks) and will not know results of blood cultures or Echo until Monday (hopefully).
Justin tried to explain how sick he was saying that he actually threw up several times which appeared to be like black tar stuff but wasn't able to get anything for nauseau or vomitting. For a SCI patient with weakened abdominal muscles or diaphragm, I can only imagine how strenuous those few days were. He said Thursday had him and Dad both just crying for the most part trying to get through this last week.
Saturday he told me that he felt that his sis & I wouldn't have been able to control ourselves had we been there to witness first hand just how bad things had gotten.
He did seem to feel better and his appetite was back. We watched some sports and ate well even through the ordeal of his condom cath not working yet again. They haven't worked right since we got him and it's a daily ordeal for him to wet himself. For those not sure enough what that means: he has to return to his room, be lifted with a hoist into his bed, be stripped of clothing and washed down (at least in the area soaked with urine), re-cathed and re-dressed, lifted back with his sling into his chair which can't happen if he soaked his chair cushion. Yesterday Mama threw a bit of a fit until they offered a way that he could be put back in his chair while his cushion cover was being washed and dried.
The condom-cath today didn't work twice in 3 hours and no one seems to believe me when I tell them that he only wet his britches once in 2 months at Atlanta. That is a huge part of the frustration. His accident was a weeks shy of 3 months ago and none of this has happened until the 11 days we get here AND EVERYTHING IS HAPPENING. I fear this is their way of trying to force him to stay here the 6 weeks they want him. We knew they would want him based on his tremendous progress and attitude to succeed but we didn't know that they would digress him in order to keep him (that is scary.............)
As if medical reasons don't scare you enough, we've heard constantly how he won't get benefits if he doesn't stay or refuses to show signs of wanting to participate all while being bed ridden and lacking in PT/OT exercises then getting sick. His therapist actually showed up Thursday evening wanting to discuss that Justin's attitude had once again been noticed through body language that he was unhappy at the VA and didn't want to cooperate. YOU THINK!!! He's running 104 fever and you want to talk to him about his attitude.
11 days in Augusta: Day 1 was met with attitude, chaos and a bed that wasn't even assigned to him. Day 2 was met with more chaos, more attitude and a chair that he couldn't use. Day 3 was met with more attitude then some hope that maybe things were going to turn around. We felt comfortable enough to at least see it through the weekend until we found out there was a bed sore after only 48 hours being there (40 hours of which he spent in the bed). Day 4 we thought we were losing him emotionally and decided not to leave him alone. Day 5 found him & dad getting a better feel for things and some thought that maybe 2 weeks were doable. Day 6 & 7 brought more hint of losing benefits and wanting to keep him 6 weeks, by day 8 there was the fever, day 9 was higher fever and throwing up yet still attitude. Day 10 was Saturday and day 11 has us worried again.
After the condom caths that didn't work twice in 3 hours, he's been wanting to sleep--while driving his chair, while sitting in his chair, while laying in his bed getting cleaned up and changed, we finally left him earlier because he said he wanted an hour or so, just come back but even then I had to change him on a bed that wasn't even made back up yet and left him sleeping same way. Dad called about an hour ago and they said it was during shift change to call back. We'll let you guys know if something changes. Robyn was worried they did something to him during the night or gave him something. This is first day we've seen him be so tired that he didn't want to be up---he's usually arguing about not being in the bed all day and today that's about all he's wanted to do.
I believe the only holding him together is the fact that dad actually made some contact trying to get him back to Shepherd hopefully by Tuesday. They have confirmed they will be working best they can come Monday to see what they can do.
He fears that for every 1 day down at VA has cost him 3 days progress he had made; essentially, he feels he has lost in 11 days the first 5 weeks at Shepherd thereby costing him the last 4-6 weeks he would have had to further his progress (since he will have to use that time to regain what he has lost being here).
We continue to thank each of you for your interest, concern, thoughts, prayers and encouragement through this journey (especially this last week and a half). And I owe Emily a very big thank you for allowing me to rant so much last Thursday. I'm not always as strong as everyone thinks and she happened to be the one that showed up when I was definitely on the verge of wanting to hurt someone. She listened and helped me stay focused, so thank you very much Emily!!!!
We hope our next update will see us making our way back to Atlanta.
Love you all................
Other than the few nurses or techs who seem open-minded to listen to us, we continue to run into the attitude that everyone going on is normal and expected and definitely feel resistance to our input or involvement in Justin's recovery or stay at the VA.
What I know right now: his fever reached 104.6 but he was advised that there was no need for concern since a patient can get to 108 before there is a serious need for alarm....hmm, that doesn't sound conforting considering that they had to use fans and pack him in ice to get it down. They couldn't use a cooling blanket because a doctor has to sign off on an order for that. Same with the vaseline lip therapy we wanted yesterday because his lips are dry and cracked for the days with fever--nurses have to have a doctor's order to use that, SO Robyn used some of the Carmex she had in her purse (go figure).
It is believed that Justin started out with a UTI and the infection from that found it's way into his veins of the bladder and spread an infection into his bloodstream. They have also as of Friday morning, ran an Echo on his heart because they claim they are now hearing a "possible murmur" which could be the result of the infection in his blood. He was placed on a broad spectrum antibiotic (which they want him on for 2 more weeks) and will not know results of blood cultures or Echo until Monday (hopefully).
Justin tried to explain how sick he was saying that he actually threw up several times which appeared to be like black tar stuff but wasn't able to get anything for nauseau or vomitting. For a SCI patient with weakened abdominal muscles or diaphragm, I can only imagine how strenuous those few days were. He said Thursday had him and Dad both just crying for the most part trying to get through this last week.
Saturday he told me that he felt that his sis & I wouldn't have been able to control ourselves had we been there to witness first hand just how bad things had gotten.
He did seem to feel better and his appetite was back. We watched some sports and ate well even through the ordeal of his condom cath not working yet again. They haven't worked right since we got him and it's a daily ordeal for him to wet himself. For those not sure enough what that means: he has to return to his room, be lifted with a hoist into his bed, be stripped of clothing and washed down (at least in the area soaked with urine), re-cathed and re-dressed, lifted back with his sling into his chair which can't happen if he soaked his chair cushion. Yesterday Mama threw a bit of a fit until they offered a way that he could be put back in his chair while his cushion cover was being washed and dried.
The condom-cath today didn't work twice in 3 hours and no one seems to believe me when I tell them that he only wet his britches once in 2 months at Atlanta. That is a huge part of the frustration. His accident was a weeks shy of 3 months ago and none of this has happened until the 11 days we get here AND EVERYTHING IS HAPPENING. I fear this is their way of trying to force him to stay here the 6 weeks they want him. We knew they would want him based on his tremendous progress and attitude to succeed but we didn't know that they would digress him in order to keep him (that is scary.............)
As if medical reasons don't scare you enough, we've heard constantly how he won't get benefits if he doesn't stay or refuses to show signs of wanting to participate all while being bed ridden and lacking in PT/OT exercises then getting sick. His therapist actually showed up Thursday evening wanting to discuss that Justin's attitude had once again been noticed through body language that he was unhappy at the VA and didn't want to cooperate. YOU THINK!!! He's running 104 fever and you want to talk to him about his attitude.
11 days in Augusta: Day 1 was met with attitude, chaos and a bed that wasn't even assigned to him. Day 2 was met with more chaos, more attitude and a chair that he couldn't use. Day 3 was met with more attitude then some hope that maybe things were going to turn around. We felt comfortable enough to at least see it through the weekend until we found out there was a bed sore after only 48 hours being there (40 hours of which he spent in the bed). Day 4 we thought we were losing him emotionally and decided not to leave him alone. Day 5 found him & dad getting a better feel for things and some thought that maybe 2 weeks were doable. Day 6 & 7 brought more hint of losing benefits and wanting to keep him 6 weeks, by day 8 there was the fever, day 9 was higher fever and throwing up yet still attitude. Day 10 was Saturday and day 11 has us worried again.
After the condom caths that didn't work twice in 3 hours, he's been wanting to sleep--while driving his chair, while sitting in his chair, while laying in his bed getting cleaned up and changed, we finally left him earlier because he said he wanted an hour or so, just come back but even then I had to change him on a bed that wasn't even made back up yet and left him sleeping same way. Dad called about an hour ago and they said it was during shift change to call back. We'll let you guys know if something changes. Robyn was worried they did something to him during the night or gave him something. This is first day we've seen him be so tired that he didn't want to be up---he's usually arguing about not being in the bed all day and today that's about all he's wanted to do.
I believe the only holding him together is the fact that dad actually made some contact trying to get him back to Shepherd hopefully by Tuesday. They have confirmed they will be working best they can come Monday to see what they can do.
He fears that for every 1 day down at VA has cost him 3 days progress he had made; essentially, he feels he has lost in 11 days the first 5 weeks at Shepherd thereby costing him the last 4-6 weeks he would have had to further his progress (since he will have to use that time to regain what he has lost being here).
We continue to thank each of you for your interest, concern, thoughts, prayers and encouragement through this journey (especially this last week and a half). And I owe Emily a very big thank you for allowing me to rant so much last Thursday. I'm not always as strong as everyone thinks and she happened to be the one that showed up when I was definitely on the verge of wanting to hurt someone. She listened and helped me stay focused, so thank you very much Emily!!!!
We hope our next update will see us making our way back to Atlanta.
Love you all................
Wednesday, September 23, 2009
Quick turnarounds
For most, you've already heard today was not a good day. Been a while since we've seen one this struggling. Started out with Dad letting me know that Justin had a bad night with fever getting up to 104, even with fever he was resistant to being in bed and more so to doctor's advice.
Dad is not feeling so well himself and there are so many other things going on that it can take its toll on the most faithful.
What I know is, Justin managed to reduce fever down around 101.3 only with help of Tylenol. As the tylenol would wear off, the fever would return. Blood & urine samples came back negative so they took more when the fever was back up and hope to find out what is causing this. He didn't want IV treatment and was drinking plenty of fluids just not eating much. Dad said he didn't want to be confined to bed and based on the first 6 days, it's understandable that things make us cautious.
Earlier report said he finally consented to IV treatment and they were going to put him on cooling blankets because he spiked back up to 104.6--last report from Dad said he was down to 103.5 and he felt comfortable enough to head back to the hotel to rest himself.
PRAY...........all I know to ask for!!!
7 days into this and I feel like we are back in Dothan fearing for the unknown. PRAY!!!
We hope to have another update tomorrow that will see him feeling better.
We appreciate you all for so many things we can never express or repay. Love you all!!!
Dad is not feeling so well himself and there are so many other things going on that it can take its toll on the most faithful.
What I know is, Justin managed to reduce fever down around 101.3 only with help of Tylenol. As the tylenol would wear off, the fever would return. Blood & urine samples came back negative so they took more when the fever was back up and hope to find out what is causing this. He didn't want IV treatment and was drinking plenty of fluids just not eating much. Dad said he didn't want to be confined to bed and based on the first 6 days, it's understandable that things make us cautious.
Earlier report said he finally consented to IV treatment and they were going to put him on cooling blankets because he spiked back up to 104.6--last report from Dad said he was down to 103.5 and he felt comfortable enough to head back to the hotel to rest himself.
PRAY...........all I know to ask for!!!
7 days into this and I feel like we are back in Dothan fearing for the unknown. PRAY!!!
We hope to have another update tomorrow that will see him feeling better.
We appreciate you all for so many things we can never express or repay. Love you all!!!
Tuesday, September 22, 2009
Blessings in Augusta
Dad has advised me that things are tolerable at VA and certainly turning around for the positive. Justin has his appetite back, has been recognized as being more cooperative and less antagonistic (counselor advice and wordage). PT/OT has been finding him to offer more time for workouts than are typically scheduled.
Dad said VA doesn't seem to have a daily schedule, more of a Mon-Wed-Fri theme but they found Justin and offered up more workouts today. They also had an important conversation with someone who seemed to recognize that doing a good job was the goal, not being threatened by another institution's way of achieving success.
While there were still things not yet resolved, it appears they are being addressed without recourse and our heavy-hearted feeling on Saturday is making both Justin and Scotty feel that the decisions we made were clearly in Justin's best interest and have been duly noted by VA. They even made a serious attempt to get the right condem-cath (just didn't get the right size---but I'll keep this G-rated--ha ha).
I'll get Dad to update tomorrow as he is the one there and so very excited about the turn-around. I just wanted to let everyone know that we prayed for the right instruments and were once again blessed!!!
Love you all and continue to thank you for your support, encouragement, prayers and thoughts!!
Dad said VA doesn't seem to have a daily schedule, more of a Mon-Wed-Fri theme but they found Justin and offered up more workouts today. They also had an important conversation with someone who seemed to recognize that doing a good job was the goal, not being threatened by another institution's way of achieving success.
While there were still things not yet resolved, it appears they are being addressed without recourse and our heavy-hearted feeling on Saturday is making both Justin and Scotty feel that the decisions we made were clearly in Justin's best interest and have been duly noted by VA. They even made a serious attempt to get the right condem-cath (just didn't get the right size---but I'll keep this G-rated--ha ha).
I'll get Dad to update tomorrow as he is the one there and so very excited about the turn-around. I just wanted to let everyone know that we prayed for the right instruments and were once again blessed!!!
Love you all and continue to thank you for your support, encouragement, prayers and thoughts!!
Sunday, September 20, 2009
Augusta Trilogy
I was going to start out with the comment that things had not gotten any better, yet somehow that would diminish the blessings of having Matt as his nurse over the weekend and Dan as counsel to manual transfers (two things that have made our 4 1/2 days stay there have a small ounce of sanity and gratitude).
Saturday was such a bad day that my DE sis advised it would probably be best for me to refrain from a blog update for a day or so until I could compose myself, my thoughts and my words. AND bad enough, we decided Justin would not be left in Augusta without someone being minutes away instead of hours away. Dad stayed behind, while sis and I made the 6+ hour ride back home (things to take care of and jobs to try to keep).
Matt's blessing was patience, compassion, understanding and an open mind. Dan's was conversation, education and an activity that actually let Justin's feet feel the floor for the first time in almost 3 months. What a simple pleasure---he's got some sensation in his left foot and can tell when both of his feet have pressure placed on them. I cannot begin to imagine what a boost that must have been to feel that moment. He needed something that profound after the last four days. Dad said it was tough and tiresome since he doesn't have his full upper-body strength but he was pleased.
Monday will bring new trials and new tribulations. I continue to pray for the right instruments that will help guide us in the right directions and for the many blessings we've received to extend out to the many wonderful people who have cared, shared, prayed and followed.
I would also like to take this time to extend our deepest sympathies to Wayne Medley and his family for their loss of Peggy Medley. She lost her battle last Wednesday. It is with sincere regrets that we were unable to offer our condolences in person and hope the family knows they will continue to be in our thoughts and prayers!!!
We love you all and pray our next update will be a positive turn around with continued progress, motivation and uplifted spirits!!!!
Saturday was such a bad day that my DE sis advised it would probably be best for me to refrain from a blog update for a day or so until I could compose myself, my thoughts and my words. AND bad enough, we decided Justin would not be left in Augusta without someone being minutes away instead of hours away. Dad stayed behind, while sis and I made the 6+ hour ride back home (things to take care of and jobs to try to keep).
Matt's blessing was patience, compassion, understanding and an open mind. Dan's was conversation, education and an activity that actually let Justin's feet feel the floor for the first time in almost 3 months. What a simple pleasure---he's got some sensation in his left foot and can tell when both of his feet have pressure placed on them. I cannot begin to imagine what a boost that must have been to feel that moment. He needed something that profound after the last four days. Dad said it was tough and tiresome since he doesn't have his full upper-body strength but he was pleased.
Monday will bring new trials and new tribulations. I continue to pray for the right instruments that will help guide us in the right directions and for the many blessings we've received to extend out to the many wonderful people who have cared, shared, prayed and followed.
I would also like to take this time to extend our deepest sympathies to Wayne Medley and his family for their loss of Peggy Medley. She lost her battle last Wednesday. It is with sincere regrets that we were unable to offer our condolences in person and hope the family knows they will continue to be in our thoughts and prayers!!!
We love you all and pray our next update will be a positive turn around with continued progress, motivation and uplifted spirits!!!!
Thursday, September 17, 2009
VA Transfer
Well, for those of you still following---and for those that expressed concerns about the VA Rehab, let it be known that you have my permission to say "I told you so", all concerns so far have been confirmed.
Our transfer was not the best, we left around 11:00 with good intentions-Augusta is roughly 2 1/2 hours from Atlanta (of course, we can't do anything normal).
The trip started with some anxiety, to be expected. Justin got a bit nauseaus so we had to stop for Pepto (amazing how I keep plugging people without thinking--ha). Anywho, none of us thought about getting a nausea pill before leaving, not even the nurses.
Well, we transferred in a manual chair, which basically means you have to stop every 30-60 minutes to do a weight shift. This was our first official, long haul road-trip so we stopped about every 30 minutes, which takes time. Then we stopped to get him something to eat (us too, we actually still take the time to do the little things LOL).
Once we made Augusta, it took 3 different departments at the VA to actually tell us where to go with each place being the wrong place. I finally managed to stop the right person in the hall that was able to get the right person we needed to get checked in who then notified the right person to come speak with us; HOWEVER, that made it nearly 4:00 and attitude was clearly running strong. It seemed to grow in strength when Shepherd was mentioned.
It didn't take long for Justin to decide he was going to wheel himself back to Atlanta. We, of course, tried to make the best of it and let him know to give it a shot. It's new, more of the same routine questions that he feels he's answered, and answered and then answered again.
Too much to really acknowledge other than they gave us the impression they were hunting for a brain injury, told us that they were just as good as Shepherd if not better, went through a lengthy speech from everyone we met about all the awards they have won. I just wanted to tell them to do there job then, if they're that good, do the job and send him on.
He wasn't too thrilled when the lady told him that they would decide if they kept him 2 weeks or 6 weeks. That's pretty much what made him decide he would hitchhike back to Shepherd if he had too, he is determined he's doing 2 weeks then going back to Atlanta.
This morning found him a bit aggitated again. He's been in bed since 7 last night and he hates that. Whlie he's not a good morning person, he surely doesn't like 24 hours in bed either. He did x-rays early, met with PT/OT--had a mix-up on the wheelchair but they are going to have that fixed by morning. Was headed for an ultrasound when we darted out at 3:00. Of course, we've been up since 5 EST making a 6 hour ride back to Atlanta to drop off the transfer van and the loaner chair Shepherd was kind enough to let us use.
Now we are back taking a moment to organize the massive amount of things we need to stuff into my car whenever we know our departure day. Will head back up tonight to see if he's doing better. He seemed a bit better when his OT Nurse April was the first to listen that he doesn't want this to be longer than 2 weeks. She was the first to seem to understand without attitude.
He does OT again around 7:30 in the morning, then PT who is temporary, he meets his regular PT nurse next Monday--more meet & greet and get used to each other time!!! He also has his counseling time with psychology but he's finally moved in a different room. Not the ones from last night. Another reason we were perturbed, they kept complaining about "you show up at 4, expect chaos, we were expecting you earlier"; YET, they didn't have his room ready, they had to put him in a different room, didn't have a supper tray ordered, had to ask for one. No TV in his bed area (which is 4 patients per room). So we wondered what would they have done had we showed up earlier???!!!!
There's a chapter in itself I could write on this experience; however, I will leave you for now and let you know how things turn out. We continue to recognize this is a step in recovery and must be endured in order to move forward. It is still early in this adventure so we remain faithful that things happen for a reason and we will move forward with this challenge also.
We thank you all for your encouragement, faith and belief. Love you all!!!!!
Our transfer was not the best, we left around 11:00 with good intentions-Augusta is roughly 2 1/2 hours from Atlanta (of course, we can't do anything normal).
The trip started with some anxiety, to be expected. Justin got a bit nauseaus so we had to stop for Pepto (amazing how I keep plugging people without thinking--ha). Anywho, none of us thought about getting a nausea pill before leaving, not even the nurses.
Well, we transferred in a manual chair, which basically means you have to stop every 30-60 minutes to do a weight shift. This was our first official, long haul road-trip so we stopped about every 30 minutes, which takes time. Then we stopped to get him something to eat (us too, we actually still take the time to do the little things LOL).
Once we made Augusta, it took 3 different departments at the VA to actually tell us where to go with each place being the wrong place. I finally managed to stop the right person in the hall that was able to get the right person we needed to get checked in who then notified the right person to come speak with us; HOWEVER, that made it nearly 4:00 and attitude was clearly running strong. It seemed to grow in strength when Shepherd was mentioned.
It didn't take long for Justin to decide he was going to wheel himself back to Atlanta. We, of course, tried to make the best of it and let him know to give it a shot. It's new, more of the same routine questions that he feels he's answered, and answered and then answered again.
Too much to really acknowledge other than they gave us the impression they were hunting for a brain injury, told us that they were just as good as Shepherd if not better, went through a lengthy speech from everyone we met about all the awards they have won. I just wanted to tell them to do there job then, if they're that good, do the job and send him on.
He wasn't too thrilled when the lady told him that they would decide if they kept him 2 weeks or 6 weeks. That's pretty much what made him decide he would hitchhike back to Shepherd if he had too, he is determined he's doing 2 weeks then going back to Atlanta.
This morning found him a bit aggitated again. He's been in bed since 7 last night and he hates that. Whlie he's not a good morning person, he surely doesn't like 24 hours in bed either. He did x-rays early, met with PT/OT--had a mix-up on the wheelchair but they are going to have that fixed by morning. Was headed for an ultrasound when we darted out at 3:00. Of course, we've been up since 5 EST making a 6 hour ride back to Atlanta to drop off the transfer van and the loaner chair Shepherd was kind enough to let us use.
Now we are back taking a moment to organize the massive amount of things we need to stuff into my car whenever we know our departure day. Will head back up tonight to see if he's doing better. He seemed a bit better when his OT Nurse April was the first to listen that he doesn't want this to be longer than 2 weeks. She was the first to seem to understand without attitude.
He does OT again around 7:30 in the morning, then PT who is temporary, he meets his regular PT nurse next Monday--more meet & greet and get used to each other time!!! He also has his counseling time with psychology but he's finally moved in a different room. Not the ones from last night. Another reason we were perturbed, they kept complaining about "you show up at 4, expect chaos, we were expecting you earlier"; YET, they didn't have his room ready, they had to put him in a different room, didn't have a supper tray ordered, had to ask for one. No TV in his bed area (which is 4 patients per room). So we wondered what would they have done had we showed up earlier???!!!!
There's a chapter in itself I could write on this experience; however, I will leave you for now and let you know how things turn out. We continue to recognize this is a step in recovery and must be endured in order to move forward. It is still early in this adventure so we remain faithful that things happen for a reason and we will move forward with this challenge also.
We thank you all for your encouragement, faith and belief. Love you all!!!!!
Tuesday, September 15, 2009
Graduation Day!!
I apologize for the delay and infrequent updates. There have been many, many things going on--some we are unable to discuss at this time---yet so much we appreciate you all for!!
Graduation Day came for Justin at 11:15 a.m. September 15, 2009. He will transfer to the VA Rehab facility in Augusta tomorrow around mid-morning. PT still has a few more tests to do in the morning at 9 then we transfer out.
I would like to say that his ASIA has changed from a B to a C as we were hoping but so far it does not appear that we will leave with an ASIA C; however, there are so many things that are proving positive that we feel confident the possibility of becoming a C upon Justin's return to Shepherd is definitely there.
He spent yesterday with me learning lifts from chair to floor and back from floor to chair. Then OT did some muscle tests. Still no triceps but improving in biceps, deltoids (??) and other areas. His right side is still strongest for him, yet he is showing signs of sensation in his left leg (go figure, we finally got medical confirmation that Justin is "weird"---ha ha).
He also indicated today at lunch that he is getting some sensation in his "ring" finger, nothing in pinky yet but he's tickled with ring finger because that is sensation 'below the injury level'. He also said that he's feeling a pain on his right heel---I didn't see anything but yukky, cracking dry skin--no sores---but it is something to watch and very interesting. But nurses told him that for each thing he gets back there may be pain associated with it (pain might be rough but the pain will be awesome, means things are happening---lol).
He asked a lot of questions yesterday, did some of his own research by borrowing one of their books and even asked Doc a few questions, but he said Doc is a a pessimist, I think it's just Doc not wanting to get expectations up or giving false hope. I think Doc will be one of those who acknowledges miracles and determination when Justin proceeds with his progress.
Justin did say he had a round with is blood pressure this morning, 154/75 w/PR at 46. He said he didn't understand what was going on, it wasn't dysreflexia but he said he felt weird. Didn't happen again and BP was 99/65 this evening. Body temp, though, has been coming back at 95.4 yesterday and 95.9 tonight. He's been staying cold lately. So much to still learn and so much to continue to be amazed over and yet so much still praying for.
I'm sure I've forgotten something and apologize if I have. We are in the midst of packing our stuff for transfer, packing his stuff for transfer and making sure we keep it all separated out so that he gets what he needs at VA, we bring home whatever they think he shouldn't have at rehab and that nothing gets left behind. Then we have to clean the housing apartment and leave it all "spic and span" (ha).
I hope everyone enjoys the pics. Love you all, hope to be home soon (unfortunately without Justin, again) and continue to pray everyday for all of us!!!!
Graduation Day came for Justin at 11:15 a.m. September 15, 2009. He will transfer to the VA Rehab facility in Augusta tomorrow around mid-morning. PT still has a few more tests to do in the morning at 9 then we transfer out.
I would like to say that his ASIA has changed from a B to a C as we were hoping but so far it does not appear that we will leave with an ASIA C; however, there are so many things that are proving positive that we feel confident the possibility of becoming a C upon Justin's return to Shepherd is definitely there.
He spent yesterday with me learning lifts from chair to floor and back from floor to chair. Then OT did some muscle tests. Still no triceps but improving in biceps, deltoids (??) and other areas. His right side is still strongest for him, yet he is showing signs of sensation in his left leg (go figure, we finally got medical confirmation that Justin is "weird"---ha ha).
He also indicated today at lunch that he is getting some sensation in his "ring" finger, nothing in pinky yet but he's tickled with ring finger because that is sensation 'below the injury level'. He also said that he's feeling a pain on his right heel---I didn't see anything but yukky, cracking dry skin--no sores---but it is something to watch and very interesting. But nurses told him that for each thing he gets back there may be pain associated with it (pain might be rough but the pain will be awesome, means things are happening---lol).
He asked a lot of questions yesterday, did some of his own research by borrowing one of their books and even asked Doc a few questions, but he said Doc is a a pessimist, I think it's just Doc not wanting to get expectations up or giving false hope. I think Doc will be one of those who acknowledges miracles and determination when Justin proceeds with his progress.
Justin did say he had a round with is blood pressure this morning, 154/75 w/PR at 46. He said he didn't understand what was going on, it wasn't dysreflexia but he said he felt weird. Didn't happen again and BP was 99/65 this evening. Body temp, though, has been coming back at 95.4 yesterday and 95.9 tonight. He's been staying cold lately. So much to still learn and so much to continue to be amazed over and yet so much still praying for.
I'm sure I've forgotten something and apologize if I have. We are in the midst of packing our stuff for transfer, packing his stuff for transfer and making sure we keep it all separated out so that he gets what he needs at VA, we bring home whatever they think he shouldn't have at rehab and that nothing gets left behind. Then we have to clean the housing apartment and leave it all "spic and span" (ha).
I hope everyone enjoys the pics. Love you all, hope to be home soon (unfortunately without Justin, again) and continue to pray everyday for all of us!!!!
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