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!!!
Thursday, October 29, 2009
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.
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