As always, I must start this update with apologies for the delay. I know each of you have been such strength and encouragement to us and sincerely regret keeping you all from more frequent updates.
Monday found us doing our best to complete their training courses and getting updated on his tests (all but the blood work). His murmr was "nothing", his kidneys are odd but the overall picture says they are working super (odd being they claim one test shows something they don't typically see and another shows lower totals they are used to but when the overall picture is looked at---which we're told that the point--overall picture, his kidneys are working perfect).
The infection in his blood came back same as the infection in his bladder and they can't explain how that managed to go from bladder to bloodstream. They in a round-about-way tried to suggest it was possible he came to them with an infection and because they didn't culture him right away, it was able to worsen--result being the infection in the blood stream.
He continues to be on IV antibiotics but is much, much better. He told me last week was BAD. He and dad both crying trying to get through it all and he said he actually was very concerned he was taking a definite turn for the worse.
Mama Hen--we were told yesterday his hemaglobin was at 13.2 first week here and went down to 11.4 last week. They claim it is because of the infection and antibiotics. His platelettes were 138,000 and reduced down to around 114,000--also saying that is due to infection and antibiotics. She suggested putting him on 10ml of something that used to be used for depression but claimed it was now used for "neuropathy" (I think that is was she said was going on with Justin's feeling like parts of his body are on fire). He finally changed his mind today saying he didn't want to take anything that had a label pertaining to depression or anxiety or 'mental' issues. They have indicated they feel he runs a risk of getting another bladder infection which just makes us feel that they are pushing to keep him sick so they can keep him (paranoid I know but it's been a nightmare the last 2 weeks).
Dr. Rivers did, however, say that they will order a CBC (hopefully this week) to check his blood counts again.
During PT his cath came off AGAIN, completely off, so while changing and cleaning I found a small rash around his groin area which hasn't been there and found that his binder was on so tight that it "chorded" his abdomen area. His nurse treated both with some kind of cream and we found out back in the gym---when his blood pressure bottomed out---that she didn't replace the new binder tight enough, which caused him to get nauseaus and almost pass out. They couldn't even read his blood pressue with the machine until they figured out the binder wasn't on right, then it finally came back reading 99/57.
They forced him to swallow lunch fast so they could force him to go to the WalMart outing in a manual chair they PIECED TOGETHER. That wore him out big-time because no one is allowed to help them with anything. So, put him in a chair he struggles with because they refuse to listen to him say what kind of chair he can handle, make him go in public with the fear that his cath will not work again and he'll urinate all over himself and claim this is all for the sake of him becoming independent.
For anyone who thinks it cannot possibly be this bad, please know it is if not worse.
Truthfully, picture yourself sitting in a chair and knowing that you have no balance. Close your eyes and sit in a chair knowing that no one is there to hold you up and you're dizzy and struggling to keep yourself steady in that chair. Now picture someone who is standing, with eyes open and full control of their body telling you to sit up---I can't, yes you can, No I can't, yes you can!! Then you almost fall and that person has to grab you and says--whew, you scared me; you okay?? Did it scare you too, did it frustrate you that you tried telling that person you couldn't do it, did it make you fear that you came close to possibly damaging yourself even more?? This scenario is a small glimpse into the arguments and frustrations.
Help us pull your pants up Justin.....I can't; yes you can, reach down and help us. What part of have no trunk control and no hands do they not understand.
I can't even find a wash rag in his room when I need to clean him. There is no order to where are his catheters or anything else you might need. No towels in the room and because he leaks at least 3 times a day, they have to put an absorbent pad on his chair cushion and I think I've been swiping someone else's because I have no clue who they belong to but I know that I need one so I grab one.
You guys think we're strong---not so much as Justin having to endure this and keeping his sanity. You ask him today, "where we going" and he tells you "crazy".
I know the update doesn't make any of you feel better and it is with sadness we continue to report such dreariness. Thankfully, his fever is down and we are working diligently to get him out of this place.
What I know right now----his case manager Danielle gave a referral to Shepherd today and Shepherd is now working with Tricare to get approval to get him transferred back. We pray that we get that approval!!!!
Soon as we know something, I will update you guys (and I promise I will try my best to make that update as soon as we know something---not a 3 day wait).
We love you guys and thank you all and appreciate everything and so much more that is in our hearts!!!
Wednesday, September 30, 2009
Sunday, September 27, 2009
11 days in Augusta
Wish I had happy, good, progressive news to report and I guess there is some to be thankful for--the fever has finally broke and has managed to stay below 101.00 for 36 hours.
Other than the few nurses or techs who seem open-minded to listen to us, we continue to run into the attitude that everyone going on is normal and expected and definitely feel resistance to our input or involvement in Justin's recovery or stay at the VA.
What I know right now: his fever reached 104.6 but he was advised that there was no need for concern since a patient can get to 108 before there is a serious need for alarm....hmm, that doesn't sound conforting considering that they had to use fans and pack him in ice to get it down. They couldn't use a cooling blanket because a doctor has to sign off on an order for that. Same with the vaseline lip therapy we wanted yesterday because his lips are dry and cracked for the days with fever--nurses have to have a doctor's order to use that, SO Robyn used some of the Carmex she had in her purse (go figure).
It is believed that Justin started out with a UTI and the infection from that found it's way into his veins of the bladder and spread an infection into his bloodstream. They have also as of Friday morning, ran an Echo on his heart because they claim they are now hearing a "possible murmur" which could be the result of the infection in his blood. He was placed on a broad spectrum antibiotic (which they want him on for 2 more weeks) and will not know results of blood cultures or Echo until Monday (hopefully).
Justin tried to explain how sick he was saying that he actually threw up several times which appeared to be like black tar stuff but wasn't able to get anything for nauseau or vomitting. For a SCI patient with weakened abdominal muscles or diaphragm, I can only imagine how strenuous those few days were. He said Thursday had him and Dad both just crying for the most part trying to get through this last week.
Saturday he told me that he felt that his sis & I wouldn't have been able to control ourselves had we been there to witness first hand just how bad things had gotten.
He did seem to feel better and his appetite was back. We watched some sports and ate well even through the ordeal of his condom cath not working yet again. They haven't worked right since we got him and it's a daily ordeal for him to wet himself. For those not sure enough what that means: he has to return to his room, be lifted with a hoist into his bed, be stripped of clothing and washed down (at least in the area soaked with urine), re-cathed and re-dressed, lifted back with his sling into his chair which can't happen if he soaked his chair cushion. Yesterday Mama threw a bit of a fit until they offered a way that he could be put back in his chair while his cushion cover was being washed and dried.
The condom-cath today didn't work twice in 3 hours and no one seems to believe me when I tell them that he only wet his britches once in 2 months at Atlanta. That is a huge part of the frustration. His accident was a weeks shy of 3 months ago and none of this has happened until the 11 days we get here AND EVERYTHING IS HAPPENING. I fear this is their way of trying to force him to stay here the 6 weeks they want him. We knew they would want him based on his tremendous progress and attitude to succeed but we didn't know that they would digress him in order to keep him (that is scary.............)
As if medical reasons don't scare you enough, we've heard constantly how he won't get benefits if he doesn't stay or refuses to show signs of wanting to participate all while being bed ridden and lacking in PT/OT exercises then getting sick. His therapist actually showed up Thursday evening wanting to discuss that Justin's attitude had once again been noticed through body language that he was unhappy at the VA and didn't want to cooperate. YOU THINK!!! He's running 104 fever and you want to talk to him about his attitude.
11 days in Augusta: Day 1 was met with attitude, chaos and a bed that wasn't even assigned to him. Day 2 was met with more chaos, more attitude and a chair that he couldn't use. Day 3 was met with more attitude then some hope that maybe things were going to turn around. We felt comfortable enough to at least see it through the weekend until we found out there was a bed sore after only 48 hours being there (40 hours of which he spent in the bed). Day 4 we thought we were losing him emotionally and decided not to leave him alone. Day 5 found him & dad getting a better feel for things and some thought that maybe 2 weeks were doable. Day 6 & 7 brought more hint of losing benefits and wanting to keep him 6 weeks, by day 8 there was the fever, day 9 was higher fever and throwing up yet still attitude. Day 10 was Saturday and day 11 has us worried again.
After the condom caths that didn't work twice in 3 hours, he's been wanting to sleep--while driving his chair, while sitting in his chair, while laying in his bed getting cleaned up and changed, we finally left him earlier because he said he wanted an hour or so, just come back but even then I had to change him on a bed that wasn't even made back up yet and left him sleeping same way. Dad called about an hour ago and they said it was during shift change to call back. We'll let you guys know if something changes. Robyn was worried they did something to him during the night or gave him something. This is first day we've seen him be so tired that he didn't want to be up---he's usually arguing about not being in the bed all day and today that's about all he's wanted to do.
I believe the only holding him together is the fact that dad actually made some contact trying to get him back to Shepherd hopefully by Tuesday. They have confirmed they will be working best they can come Monday to see what they can do.
He fears that for every 1 day down at VA has cost him 3 days progress he had made; essentially, he feels he has lost in 11 days the first 5 weeks at Shepherd thereby costing him the last 4-6 weeks he would have had to further his progress (since he will have to use that time to regain what he has lost being here).
We continue to thank each of you for your interest, concern, thoughts, prayers and encouragement through this journey (especially this last week and a half). And I owe Emily a very big thank you for allowing me to rant so much last Thursday. I'm not always as strong as everyone thinks and she happened to be the one that showed up when I was definitely on the verge of wanting to hurt someone. She listened and helped me stay focused, so thank you very much Emily!!!!
We hope our next update will see us making our way back to Atlanta.
Love you all................
Other than the few nurses or techs who seem open-minded to listen to us, we continue to run into the attitude that everyone going on is normal and expected and definitely feel resistance to our input or involvement in Justin's recovery or stay at the VA.
What I know right now: his fever reached 104.6 but he was advised that there was no need for concern since a patient can get to 108 before there is a serious need for alarm....hmm, that doesn't sound conforting considering that they had to use fans and pack him in ice to get it down. They couldn't use a cooling blanket because a doctor has to sign off on an order for that. Same with the vaseline lip therapy we wanted yesterday because his lips are dry and cracked for the days with fever--nurses have to have a doctor's order to use that, SO Robyn used some of the Carmex she had in her purse (go figure).
It is believed that Justin started out with a UTI and the infection from that found it's way into his veins of the bladder and spread an infection into his bloodstream. They have also as of Friday morning, ran an Echo on his heart because they claim they are now hearing a "possible murmur" which could be the result of the infection in his blood. He was placed on a broad spectrum antibiotic (which they want him on for 2 more weeks) and will not know results of blood cultures or Echo until Monday (hopefully).
Justin tried to explain how sick he was saying that he actually threw up several times which appeared to be like black tar stuff but wasn't able to get anything for nauseau or vomitting. For a SCI patient with weakened abdominal muscles or diaphragm, I can only imagine how strenuous those few days were. He said Thursday had him and Dad both just crying for the most part trying to get through this last week.
Saturday he told me that he felt that his sis & I wouldn't have been able to control ourselves had we been there to witness first hand just how bad things had gotten.
He did seem to feel better and his appetite was back. We watched some sports and ate well even through the ordeal of his condom cath not working yet again. They haven't worked right since we got him and it's a daily ordeal for him to wet himself. For those not sure enough what that means: he has to return to his room, be lifted with a hoist into his bed, be stripped of clothing and washed down (at least in the area soaked with urine), re-cathed and re-dressed, lifted back with his sling into his chair which can't happen if he soaked his chair cushion. Yesterday Mama threw a bit of a fit until they offered a way that he could be put back in his chair while his cushion cover was being washed and dried.
The condom-cath today didn't work twice in 3 hours and no one seems to believe me when I tell them that he only wet his britches once in 2 months at Atlanta. That is a huge part of the frustration. His accident was a weeks shy of 3 months ago and none of this has happened until the 11 days we get here AND EVERYTHING IS HAPPENING. I fear this is their way of trying to force him to stay here the 6 weeks they want him. We knew they would want him based on his tremendous progress and attitude to succeed but we didn't know that they would digress him in order to keep him (that is scary.............)
As if medical reasons don't scare you enough, we've heard constantly how he won't get benefits if he doesn't stay or refuses to show signs of wanting to participate all while being bed ridden and lacking in PT/OT exercises then getting sick. His therapist actually showed up Thursday evening wanting to discuss that Justin's attitude had once again been noticed through body language that he was unhappy at the VA and didn't want to cooperate. YOU THINK!!! He's running 104 fever and you want to talk to him about his attitude.
11 days in Augusta: Day 1 was met with attitude, chaos and a bed that wasn't even assigned to him. Day 2 was met with more chaos, more attitude and a chair that he couldn't use. Day 3 was met with more attitude then some hope that maybe things were going to turn around. We felt comfortable enough to at least see it through the weekend until we found out there was a bed sore after only 48 hours being there (40 hours of which he spent in the bed). Day 4 we thought we were losing him emotionally and decided not to leave him alone. Day 5 found him & dad getting a better feel for things and some thought that maybe 2 weeks were doable. Day 6 & 7 brought more hint of losing benefits and wanting to keep him 6 weeks, by day 8 there was the fever, day 9 was higher fever and throwing up yet still attitude. Day 10 was Saturday and day 11 has us worried again.
After the condom caths that didn't work twice in 3 hours, he's been wanting to sleep--while driving his chair, while sitting in his chair, while laying in his bed getting cleaned up and changed, we finally left him earlier because he said he wanted an hour or so, just come back but even then I had to change him on a bed that wasn't even made back up yet and left him sleeping same way. Dad called about an hour ago and they said it was during shift change to call back. We'll let you guys know if something changes. Robyn was worried they did something to him during the night or gave him something. This is first day we've seen him be so tired that he didn't want to be up---he's usually arguing about not being in the bed all day and today that's about all he's wanted to do.
I believe the only holding him together is the fact that dad actually made some contact trying to get him back to Shepherd hopefully by Tuesday. They have confirmed they will be working best they can come Monday to see what they can do.
He fears that for every 1 day down at VA has cost him 3 days progress he had made; essentially, he feels he has lost in 11 days the first 5 weeks at Shepherd thereby costing him the last 4-6 weeks he would have had to further his progress (since he will have to use that time to regain what he has lost being here).
We continue to thank each of you for your interest, concern, thoughts, prayers and encouragement through this journey (especially this last week and a half). And I owe Emily a very big thank you for allowing me to rant so much last Thursday. I'm not always as strong as everyone thinks and she happened to be the one that showed up when I was definitely on the verge of wanting to hurt someone. She listened and helped me stay focused, so thank you very much Emily!!!!
We hope our next update will see us making our way back to Atlanta.
Love you all................
Wednesday, September 23, 2009
Quick turnarounds
For most, you've already heard today was not a good day. Been a while since we've seen one this struggling. Started out with Dad letting me know that Justin had a bad night with fever getting up to 104, even with fever he was resistant to being in bed and more so to doctor's advice.
Dad is not feeling so well himself and there are so many other things going on that it can take its toll on the most faithful.
What I know is, Justin managed to reduce fever down around 101.3 only with help of Tylenol. As the tylenol would wear off, the fever would return. Blood & urine samples came back negative so they took more when the fever was back up and hope to find out what is causing this. He didn't want IV treatment and was drinking plenty of fluids just not eating much. Dad said he didn't want to be confined to bed and based on the first 6 days, it's understandable that things make us cautious.
Earlier report said he finally consented to IV treatment and they were going to put him on cooling blankets because he spiked back up to 104.6--last report from Dad said he was down to 103.5 and he felt comfortable enough to head back to the hotel to rest himself.
PRAY...........all I know to ask for!!!
7 days into this and I feel like we are back in Dothan fearing for the unknown. PRAY!!!
We hope to have another update tomorrow that will see him feeling better.
We appreciate you all for so many things we can never express or repay. Love you all!!!
Dad is not feeling so well himself and there are so many other things going on that it can take its toll on the most faithful.
What I know is, Justin managed to reduce fever down around 101.3 only with help of Tylenol. As the tylenol would wear off, the fever would return. Blood & urine samples came back negative so they took more when the fever was back up and hope to find out what is causing this. He didn't want IV treatment and was drinking plenty of fluids just not eating much. Dad said he didn't want to be confined to bed and based on the first 6 days, it's understandable that things make us cautious.
Earlier report said he finally consented to IV treatment and they were going to put him on cooling blankets because he spiked back up to 104.6--last report from Dad said he was down to 103.5 and he felt comfortable enough to head back to the hotel to rest himself.
PRAY...........all I know to ask for!!!
7 days into this and I feel like we are back in Dothan fearing for the unknown. PRAY!!!
We hope to have another update tomorrow that will see him feeling better.
We appreciate you all for so many things we can never express or repay. Love you all!!!
Tuesday, September 22, 2009
Blessings in Augusta
Dad has advised me that things are tolerable at VA and certainly turning around for the positive. Justin has his appetite back, has been recognized as being more cooperative and less antagonistic (counselor advice and wordage). PT/OT has been finding him to offer more time for workouts than are typically scheduled.
Dad said VA doesn't seem to have a daily schedule, more of a Mon-Wed-Fri theme but they found Justin and offered up more workouts today. They also had an important conversation with someone who seemed to recognize that doing a good job was the goal, not being threatened by another institution's way of achieving success.
While there were still things not yet resolved, it appears they are being addressed without recourse and our heavy-hearted feeling on Saturday is making both Justin and Scotty feel that the decisions we made were clearly in Justin's best interest and have been duly noted by VA. They even made a serious attempt to get the right condem-cath (just didn't get the right size---but I'll keep this G-rated--ha ha).
I'll get Dad to update tomorrow as he is the one there and so very excited about the turn-around. I just wanted to let everyone know that we prayed for the right instruments and were once again blessed!!!
Love you all and continue to thank you for your support, encouragement, prayers and thoughts!!
Dad said VA doesn't seem to have a daily schedule, more of a Mon-Wed-Fri theme but they found Justin and offered up more workouts today. They also had an important conversation with someone who seemed to recognize that doing a good job was the goal, not being threatened by another institution's way of achieving success.
While there were still things not yet resolved, it appears they are being addressed without recourse and our heavy-hearted feeling on Saturday is making both Justin and Scotty feel that the decisions we made were clearly in Justin's best interest and have been duly noted by VA. They even made a serious attempt to get the right condem-cath (just didn't get the right size---but I'll keep this G-rated--ha ha).
I'll get Dad to update tomorrow as he is the one there and so very excited about the turn-around. I just wanted to let everyone know that we prayed for the right instruments and were once again blessed!!!
Love you all and continue to thank you for your support, encouragement, prayers and thoughts!!
Sunday, September 20, 2009
Augusta Trilogy
I was going to start out with the comment that things had not gotten any better, yet somehow that would diminish the blessings of having Matt as his nurse over the weekend and Dan as counsel to manual transfers (two things that have made our 4 1/2 days stay there have a small ounce of sanity and gratitude).
Saturday was such a bad day that my DE sis advised it would probably be best for me to refrain from a blog update for a day or so until I could compose myself, my thoughts and my words. AND bad enough, we decided Justin would not be left in Augusta without someone being minutes away instead of hours away. Dad stayed behind, while sis and I made the 6+ hour ride back home (things to take care of and jobs to try to keep).
Matt's blessing was patience, compassion, understanding and an open mind. Dan's was conversation, education and an activity that actually let Justin's feet feel the floor for the first time in almost 3 months. What a simple pleasure---he's got some sensation in his left foot and can tell when both of his feet have pressure placed on them. I cannot begin to imagine what a boost that must have been to feel that moment. He needed something that profound after the last four days. Dad said it was tough and tiresome since he doesn't have his full upper-body strength but he was pleased.
Monday will bring new trials and new tribulations. I continue to pray for the right instruments that will help guide us in the right directions and for the many blessings we've received to extend out to the many wonderful people who have cared, shared, prayed and followed.
I would also like to take this time to extend our deepest sympathies to Wayne Medley and his family for their loss of Peggy Medley. She lost her battle last Wednesday. It is with sincere regrets that we were unable to offer our condolences in person and hope the family knows they will continue to be in our thoughts and prayers!!!
We love you all and pray our next update will be a positive turn around with continued progress, motivation and uplifted spirits!!!!
Saturday was such a bad day that my DE sis advised it would probably be best for me to refrain from a blog update for a day or so until I could compose myself, my thoughts and my words. AND bad enough, we decided Justin would not be left in Augusta without someone being minutes away instead of hours away. Dad stayed behind, while sis and I made the 6+ hour ride back home (things to take care of and jobs to try to keep).
Matt's blessing was patience, compassion, understanding and an open mind. Dan's was conversation, education and an activity that actually let Justin's feet feel the floor for the first time in almost 3 months. What a simple pleasure---he's got some sensation in his left foot and can tell when both of his feet have pressure placed on them. I cannot begin to imagine what a boost that must have been to feel that moment. He needed something that profound after the last four days. Dad said it was tough and tiresome since he doesn't have his full upper-body strength but he was pleased.
Monday will bring new trials and new tribulations. I continue to pray for the right instruments that will help guide us in the right directions and for the many blessings we've received to extend out to the many wonderful people who have cared, shared, prayed and followed.
I would also like to take this time to extend our deepest sympathies to Wayne Medley and his family for their loss of Peggy Medley. She lost her battle last Wednesday. It is with sincere regrets that we were unable to offer our condolences in person and hope the family knows they will continue to be in our thoughts and prayers!!!
We love you all and pray our next update will be a positive turn around with continued progress, motivation and uplifted spirits!!!!
Thursday, September 17, 2009
VA Transfer
Well, for those of you still following---and for those that expressed concerns about the VA Rehab, let it be known that you have my permission to say "I told you so", all concerns so far have been confirmed.
Our transfer was not the best, we left around 11:00 with good intentions-Augusta is roughly 2 1/2 hours from Atlanta (of course, we can't do anything normal).
The trip started with some anxiety, to be expected. Justin got a bit nauseaus so we had to stop for Pepto (amazing how I keep plugging people without thinking--ha). Anywho, none of us thought about getting a nausea pill before leaving, not even the nurses.
Well, we transferred in a manual chair, which basically means you have to stop every 30-60 minutes to do a weight shift. This was our first official, long haul road-trip so we stopped about every 30 minutes, which takes time. Then we stopped to get him something to eat (us too, we actually still take the time to do the little things LOL).
Once we made Augusta, it took 3 different departments at the VA to actually tell us where to go with each place being the wrong place. I finally managed to stop the right person in the hall that was able to get the right person we needed to get checked in who then notified the right person to come speak with us; HOWEVER, that made it nearly 4:00 and attitude was clearly running strong. It seemed to grow in strength when Shepherd was mentioned.
It didn't take long for Justin to decide he was going to wheel himself back to Atlanta. We, of course, tried to make the best of it and let him know to give it a shot. It's new, more of the same routine questions that he feels he's answered, and answered and then answered again.
Too much to really acknowledge other than they gave us the impression they were hunting for a brain injury, told us that they were just as good as Shepherd if not better, went through a lengthy speech from everyone we met about all the awards they have won. I just wanted to tell them to do there job then, if they're that good, do the job and send him on.
He wasn't too thrilled when the lady told him that they would decide if they kept him 2 weeks or 6 weeks. That's pretty much what made him decide he would hitchhike back to Shepherd if he had too, he is determined he's doing 2 weeks then going back to Atlanta.
This morning found him a bit aggitated again. He's been in bed since 7 last night and he hates that. Whlie he's not a good morning person, he surely doesn't like 24 hours in bed either. He did x-rays early, met with PT/OT--had a mix-up on the wheelchair but they are going to have that fixed by morning. Was headed for an ultrasound when we darted out at 3:00. Of course, we've been up since 5 EST making a 6 hour ride back to Atlanta to drop off the transfer van and the loaner chair Shepherd was kind enough to let us use.
Now we are back taking a moment to organize the massive amount of things we need to stuff into my car whenever we know our departure day. Will head back up tonight to see if he's doing better. He seemed a bit better when his OT Nurse April was the first to listen that he doesn't want this to be longer than 2 weeks. She was the first to seem to understand without attitude.
He does OT again around 7:30 in the morning, then PT who is temporary, he meets his regular PT nurse next Monday--more meet & greet and get used to each other time!!! He also has his counseling time with psychology but he's finally moved in a different room. Not the ones from last night. Another reason we were perturbed, they kept complaining about "you show up at 4, expect chaos, we were expecting you earlier"; YET, they didn't have his room ready, they had to put him in a different room, didn't have a supper tray ordered, had to ask for one. No TV in his bed area (which is 4 patients per room). So we wondered what would they have done had we showed up earlier???!!!!
There's a chapter in itself I could write on this experience; however, I will leave you for now and let you know how things turn out. We continue to recognize this is a step in recovery and must be endured in order to move forward. It is still early in this adventure so we remain faithful that things happen for a reason and we will move forward with this challenge also.
We thank you all for your encouragement, faith and belief. Love you all!!!!!
Our transfer was not the best, we left around 11:00 with good intentions-Augusta is roughly 2 1/2 hours from Atlanta (of course, we can't do anything normal).
The trip started with some anxiety, to be expected. Justin got a bit nauseaus so we had to stop for Pepto (amazing how I keep plugging people without thinking--ha). Anywho, none of us thought about getting a nausea pill before leaving, not even the nurses.
Well, we transferred in a manual chair, which basically means you have to stop every 30-60 minutes to do a weight shift. This was our first official, long haul road-trip so we stopped about every 30 minutes, which takes time. Then we stopped to get him something to eat (us too, we actually still take the time to do the little things LOL).
Once we made Augusta, it took 3 different departments at the VA to actually tell us where to go with each place being the wrong place. I finally managed to stop the right person in the hall that was able to get the right person we needed to get checked in who then notified the right person to come speak with us; HOWEVER, that made it nearly 4:00 and attitude was clearly running strong. It seemed to grow in strength when Shepherd was mentioned.
It didn't take long for Justin to decide he was going to wheel himself back to Atlanta. We, of course, tried to make the best of it and let him know to give it a shot. It's new, more of the same routine questions that he feels he's answered, and answered and then answered again.
Too much to really acknowledge other than they gave us the impression they were hunting for a brain injury, told us that they were just as good as Shepherd if not better, went through a lengthy speech from everyone we met about all the awards they have won. I just wanted to tell them to do there job then, if they're that good, do the job and send him on.
He wasn't too thrilled when the lady told him that they would decide if they kept him 2 weeks or 6 weeks. That's pretty much what made him decide he would hitchhike back to Shepherd if he had too, he is determined he's doing 2 weeks then going back to Atlanta.
This morning found him a bit aggitated again. He's been in bed since 7 last night and he hates that. Whlie he's not a good morning person, he surely doesn't like 24 hours in bed either. He did x-rays early, met with PT/OT--had a mix-up on the wheelchair but they are going to have that fixed by morning. Was headed for an ultrasound when we darted out at 3:00. Of course, we've been up since 5 EST making a 6 hour ride back to Atlanta to drop off the transfer van and the loaner chair Shepherd was kind enough to let us use.
Now we are back taking a moment to organize the massive amount of things we need to stuff into my car whenever we know our departure day. Will head back up tonight to see if he's doing better. He seemed a bit better when his OT Nurse April was the first to listen that he doesn't want this to be longer than 2 weeks. She was the first to seem to understand without attitude.
He does OT again around 7:30 in the morning, then PT who is temporary, he meets his regular PT nurse next Monday--more meet & greet and get used to each other time!!! He also has his counseling time with psychology but he's finally moved in a different room. Not the ones from last night. Another reason we were perturbed, they kept complaining about "you show up at 4, expect chaos, we were expecting you earlier"; YET, they didn't have his room ready, they had to put him in a different room, didn't have a supper tray ordered, had to ask for one. No TV in his bed area (which is 4 patients per room). So we wondered what would they have done had we showed up earlier???!!!!
There's a chapter in itself I could write on this experience; however, I will leave you for now and let you know how things turn out. We continue to recognize this is a step in recovery and must be endured in order to move forward. It is still early in this adventure so we remain faithful that things happen for a reason and we will move forward with this challenge also.
We thank you all for your encouragement, faith and belief. Love you all!!!!!
Tuesday, September 15, 2009
Graduation Day!!
I apologize for the delay and infrequent updates. There have been many, many things going on--some we are unable to discuss at this time---yet so much we appreciate you all for!!
Graduation Day came for Justin at 11:15 a.m. September 15, 2009. He will transfer to the VA Rehab facility in Augusta tomorrow around mid-morning. PT still has a few more tests to do in the morning at 9 then we transfer out.
I would like to say that his ASIA has changed from a B to a C as we were hoping but so far it does not appear that we will leave with an ASIA C; however, there are so many things that are proving positive that we feel confident the possibility of becoming a C upon Justin's return to Shepherd is definitely there.
He spent yesterday with me learning lifts from chair to floor and back from floor to chair. Then OT did some muscle tests. Still no triceps but improving in biceps, deltoids (??) and other areas. His right side is still strongest for him, yet he is showing signs of sensation in his left leg (go figure, we finally got medical confirmation that Justin is "weird"---ha ha).
He also indicated today at lunch that he is getting some sensation in his "ring" finger, nothing in pinky yet but he's tickled with ring finger because that is sensation 'below the injury level'. He also said that he's feeling a pain on his right heel---I didn't see anything but yukky, cracking dry skin--no sores---but it is something to watch and very interesting. But nurses told him that for each thing he gets back there may be pain associated with it (pain might be rough but the pain will be awesome, means things are happening---lol).
He asked a lot of questions yesterday, did some of his own research by borrowing one of their books and even asked Doc a few questions, but he said Doc is a a pessimist, I think it's just Doc not wanting to get expectations up or giving false hope. I think Doc will be one of those who acknowledges miracles and determination when Justin proceeds with his progress.
Justin did say he had a round with is blood pressure this morning, 154/75 w/PR at 46. He said he didn't understand what was going on, it wasn't dysreflexia but he said he felt weird. Didn't happen again and BP was 99/65 this evening. Body temp, though, has been coming back at 95.4 yesterday and 95.9 tonight. He's been staying cold lately. So much to still learn and so much to continue to be amazed over and yet so much still praying for.
I'm sure I've forgotten something and apologize if I have. We are in the midst of packing our stuff for transfer, packing his stuff for transfer and making sure we keep it all separated out so that he gets what he needs at VA, we bring home whatever they think he shouldn't have at rehab and that nothing gets left behind. Then we have to clean the housing apartment and leave it all "spic and span" (ha).
I hope everyone enjoys the pics. Love you all, hope to be home soon (unfortunately without Justin, again) and continue to pray everyday for all of us!!!!
Graduation Day came for Justin at 11:15 a.m. September 15, 2009. He will transfer to the VA Rehab facility in Augusta tomorrow around mid-morning. PT still has a few more tests to do in the morning at 9 then we transfer out.
I would like to say that his ASIA has changed from a B to a C as we were hoping but so far it does not appear that we will leave with an ASIA C; however, there are so many things that are proving positive that we feel confident the possibility of becoming a C upon Justin's return to Shepherd is definitely there.
He spent yesterday with me learning lifts from chair to floor and back from floor to chair. Then OT did some muscle tests. Still no triceps but improving in biceps, deltoids (??) and other areas. His right side is still strongest for him, yet he is showing signs of sensation in his left leg (go figure, we finally got medical confirmation that Justin is "weird"---ha ha).
He also indicated today at lunch that he is getting some sensation in his "ring" finger, nothing in pinky yet but he's tickled with ring finger because that is sensation 'below the injury level'. He also said that he's feeling a pain on his right heel---I didn't see anything but yukky, cracking dry skin--no sores---but it is something to watch and very interesting. But nurses told him that for each thing he gets back there may be pain associated with it (pain might be rough but the pain will be awesome, means things are happening---lol).
He asked a lot of questions yesterday, did some of his own research by borrowing one of their books and even asked Doc a few questions, but he said Doc is a a pessimist, I think it's just Doc not wanting to get expectations up or giving false hope. I think Doc will be one of those who acknowledges miracles and determination when Justin proceeds with his progress.
Justin did say he had a round with is blood pressure this morning, 154/75 w/PR at 46. He said he didn't understand what was going on, it wasn't dysreflexia but he said he felt weird. Didn't happen again and BP was 99/65 this evening. Body temp, though, has been coming back at 95.4 yesterday and 95.9 tonight. He's been staying cold lately. So much to still learn and so much to continue to be amazed over and yet so much still praying for.
I'm sure I've forgotten something and apologize if I have. We are in the midst of packing our stuff for transfer, packing his stuff for transfer and making sure we keep it all separated out so that he gets what he needs at VA, we bring home whatever they think he shouldn't have at rehab and that nothing gets left behind. Then we have to clean the housing apartment and leave it all "spic and span" (ha).
I hope everyone enjoys the pics. Love you all, hope to be home soon (unfortunately without Justin, again) and continue to pray everyday for all of us!!!!
Saturday, September 12, 2009
Touching base with home
Would like to ask for a special prayer for Peggy Medley, her husband Wayne, their son Terry and all of the rest of the family. We were notified Peggy is in failing health and extend our personal prayers for God's many blessings to reach down to her and her family during their journey through this time in their lives. It is my prayer they will find comfort and strength through this. So many of our blessings have come through the wonderful efforts of our family and I know they will be there for Peggy and Wayne in any way possible. I only regret that we are unable to be there for support and encouragement. Our thoughts and prayers will continue to be with them through this trial.
I extend a special thank you to Ms. Cheryl----the cookies are awesome and were a wonderful surprise to Justin (and us). I will try to get a photo so we can get them posted on the blog site. Thank you so much for being such an inspiration to our Robyn and for being a positive influence in her life (during our absence or not).
To LT---Justin was excited to hear you may be in the area to be able to see him soon. Also indicated he needs to give you a call. May come as early as next week--so stay on the alert for his call!! He's trying hard to follow your orders (lol).
As for his update---he seemed in better attitude and/or spirits Friday. Gave no one too much trouble getting him up and going at 7:30 Friday, was even awake and had a conversation with doc when he did rounds at 7:00. We did the manual lift from bed to shower chair, did shower then back to bed for dressing and then lift to manual chair. We headed straight into a meeting with counseling which proved very helpful for us as parents. And I must note I feel that having Robyn here helped with Justin's mood.
We found out late Friday afternoon that VA has confirmed transfer on Wednesday morning. We will know more specifics on Monday morning. Justin is anxious as are we yet we know this has to happen in order to move to the next level of his recovery. We continue to pray for God's guidance and blessings through our journey.
Today was slow to start, had a mid-day PT workout then a late lunch and some entertainment in the Garden----felt like Central park in New York. A newly acquired friend and inspiration had some family show up for an early birthday and they brought karaoke (go figure), so there was some free entertainment, including a few songs performed by your's truly---Justin. Dad got some of it on camcorder and Robyn tooks some pics. We'll try to get some loaded. It did exhaust him and he was dozing about the time the LSU game decided to come on but we couldn't bring ourselves to wake him. He said that while it tired him out that he felt it would help him with his diaphragm (doesn't look spelled right) muscles. He spent some time in his manual and transferred over mid-afternoon back to his other chair. Still had good spirits but got to be a bit of a grouch late.
Hope to see you all soon and will update about VA when we get final details. Thanks to everyone so much for their continued support, inspiration and prayers.
I extend a special thank you to Ms. Cheryl----the cookies are awesome and were a wonderful surprise to Justin (and us). I will try to get a photo so we can get them posted on the blog site. Thank you so much for being such an inspiration to our Robyn and for being a positive influence in her life (during our absence or not).
To LT---Justin was excited to hear you may be in the area to be able to see him soon. Also indicated he needs to give you a call. May come as early as next week--so stay on the alert for his call!! He's trying hard to follow your orders (lol).
As for his update---he seemed in better attitude and/or spirits Friday. Gave no one too much trouble getting him up and going at 7:30 Friday, was even awake and had a conversation with doc when he did rounds at 7:00. We did the manual lift from bed to shower chair, did shower then back to bed for dressing and then lift to manual chair. We headed straight into a meeting with counseling which proved very helpful for us as parents. And I must note I feel that having Robyn here helped with Justin's mood.
We found out late Friday afternoon that VA has confirmed transfer on Wednesday morning. We will know more specifics on Monday morning. Justin is anxious as are we yet we know this has to happen in order to move to the next level of his recovery. We continue to pray for God's guidance and blessings through our journey.
Today was slow to start, had a mid-day PT workout then a late lunch and some entertainment in the Garden----felt like Central park in New York. A newly acquired friend and inspiration had some family show up for an early birthday and they brought karaoke (go figure), so there was some free entertainment, including a few songs performed by your's truly---Justin. Dad got some of it on camcorder and Robyn tooks some pics. We'll try to get some loaded. It did exhaust him and he was dozing about the time the LSU game decided to come on but we couldn't bring ourselves to wake him. He said that while it tired him out that he felt it would help him with his diaphragm (doesn't look spelled right) muscles. He spent some time in his manual and transferred over mid-afternoon back to his other chair. Still had good spirits but got to be a bit of a grouch late.
Hope to see you all soon and will update about VA when we get final details. Thanks to everyone so much for their continued support, inspiration and prayers.
Thursday, September 10, 2009
Life changes
For anyone that feels that seasonal change in the air, you can relate to the changes that are in the air for this journey too.
Life goes on for so many and interests change or stall or get interrupted.
We have so much going on yet so many times it changes, stalls or gets interrupted.
What we know tonight----Justin spent 4 hours in his manual chair!!!!! Sorry, didn't get pictures because I wasn't prepared to be spectator. I spent another day of training that turned into a transfer into manual that stayed that way. I pretty much had to tell him transfer out or else, I want to go to housing to fix supper (wasn't that rude or aggressive but was pretty matter of fact to get him back in his motorized).
He said he has some sensation is his palms, thumb and feeling a slight hint in his pointer finger and middle finger. He was excited about middle finger because he said from middle finger to pinkie is C8. For those not sure, C8 is BELOW the point of injury which means "things are waking up" as Justin put it. THERE IS SERIOUS REASON TO BE EXCITED WHEN THINGS BELOW THE POINT OF INJURY SHOW SIGNS OF RECOVERY!!!!
Must explain though---arms aren't controlled by C8. Things that are amazing is that C6 may control arms but not hands. C7 and even C8 determine if you will pick up a pencil or not, grab a cup of coffee, even if you can reach out for it you might not can grab it (amazing stuff).
I saw today how much he has adapted and tries to do what he needs to do. I know a HUGE portion of this is to be independant---whew, another day for another conversation.
What I do know that I feel that I saw without a doubt is his ability to put on his gloves for his manual chair and I saw his fingers stretch out. I know I saw his fingers stretch out.......Mama Hen, Henrietta----help me here................I know I saw a spontaneous reaction to his body trying to do something and his fingers stretched out!!!!!
We do another round of training in the morning, find out what the "outing" will be, we have to meet with counseling after and I feel he'll be in the manual chair the rest of the weekend. He's striving for that next and it seems to be igniting some motivation.
We love you all, miss you all, appreciate you all and continue our prayers-----we would not have made it this far without your encouragement, prayers and God!!!!
Life goes on for so many and interests change or stall or get interrupted.
We have so much going on yet so many times it changes, stalls or gets interrupted.
What we know tonight----Justin spent 4 hours in his manual chair!!!!! Sorry, didn't get pictures because I wasn't prepared to be spectator. I spent another day of training that turned into a transfer into manual that stayed that way. I pretty much had to tell him transfer out or else, I want to go to housing to fix supper (wasn't that rude or aggressive but was pretty matter of fact to get him back in his motorized).
He said he has some sensation is his palms, thumb and feeling a slight hint in his pointer finger and middle finger. He was excited about middle finger because he said from middle finger to pinkie is C8. For those not sure, C8 is BELOW the point of injury which means "things are waking up" as Justin put it. THERE IS SERIOUS REASON TO BE EXCITED WHEN THINGS BELOW THE POINT OF INJURY SHOW SIGNS OF RECOVERY!!!!
Must explain though---arms aren't controlled by C8. Things that are amazing is that C6 may control arms but not hands. C7 and even C8 determine if you will pick up a pencil or not, grab a cup of coffee, even if you can reach out for it you might not can grab it (amazing stuff).
I saw today how much he has adapted and tries to do what he needs to do. I know a HUGE portion of this is to be independant---whew, another day for another conversation.
What I do know that I feel that I saw without a doubt is his ability to put on his gloves for his manual chair and I saw his fingers stretch out. I know I saw his fingers stretch out.......Mama Hen, Henrietta----help me here................I know I saw a spontaneous reaction to his body trying to do something and his fingers stretched out!!!!!
We do another round of training in the morning, find out what the "outing" will be, we have to meet with counseling after and I feel he'll be in the manual chair the rest of the weekend. He's striving for that next and it seems to be igniting some motivation.
We love you all, miss you all, appreciate you all and continue our prayers-----we would not have made it this far without your encouragement, prayers and God!!!!
Thursday
Been a busy week, sorry no pics yet loaded.
Doing a lot of training this week. Basic plan turned into being in every PT/OT/TR session he has to do hands on (good thing they pass out sheets with instructions---and pictures, ha).
Heading back up there, just wanted to make a presence. His BP was low yesterday coming back at 95/61 and temp at 98.2. Don't know stats today but he is cold, finally put his snuggie on.
He was slow getting going this morning but doing better since he's been up. Going back into PT in about 20 minutes then does TR Art and finishes off with counseling---not sure if they expect us in there for that.
Will touch base again tonight if possible and update again after tomorrow's outing. Looks like Atlanta weather may interfere with that---was to be either Atlanta Zoo or the park but weather calls for 50% rain----Jenn says we may end up rerunning a movie with popcorn (fun--lol).
Love you guys and miss you all!!!
Doing a lot of training this week. Basic plan turned into being in every PT/OT/TR session he has to do hands on (good thing they pass out sheets with instructions---and pictures, ha).
Heading back up there, just wanted to make a presence. His BP was low yesterday coming back at 95/61 and temp at 98.2. Don't know stats today but he is cold, finally put his snuggie on.
He was slow getting going this morning but doing better since he's been up. Going back into PT in about 20 minutes then does TR Art and finishes off with counseling---not sure if they expect us in there for that.
Will touch base again tonight if possible and update again after tomorrow's outing. Looks like Atlanta weather may interfere with that---was to be either Atlanta Zoo or the park but weather calls for 50% rain----Jenn says we may end up rerunning a movie with popcorn (fun--lol).
Love you guys and miss you all!!!
Tuesday, September 8, 2009
New week
Labor Day was nice in Atlanta weather. Justin had a good day with BP at 133/86 with temp at 99.1; today's BP was at 95/61 and temp at 98.2
We did a day of training--OT this morning seemed routine. I thought we would be learning something new and think I offended Jenn when I apparently laughed out loud and had to explain that we were going over things we'd been doing for weeks. Then I felt I had stepped on toes by explaining our head nurse from week one was helping to advocate 'hands on' then class training. Most of what we did I felt we had learned and was already adapting to what worked best for Justin and us. Didn't mean to but I felt we may have offended.
From there we went into the TR portion---mostly tons & tons of paper work, resources, laws and 'future' contact after discharge. Whew----lots more to add to our collection of educational reading!!
Then PT started; I knew Beth was going to be the one to work us and work us hard. We are set again tomorrow for more learning with her, then again on Friday. We have one more 1/2 day class to attend and then we wait for when they want to transfer him to Augusta.
Each day changes here where VA is concerned and we finally had to explain that our housing time soon runs out and we have 'jobs' and obligations. We were advised they hope to know by Monday what will happen and when (another hurry and wait scenario). Amazing to have two facilities supposedly eager to have the same person----I pray the VA will want to turn him loose once they get him (the way Shepherd talks, I'm wondering).
Didn't get photos uploaded yet; will do my best to get some new ones done.
Love you all, miss home, think of you all often. Please continue to pray. Thank you!!!!
We did a day of training--OT this morning seemed routine. I thought we would be learning something new and think I offended Jenn when I apparently laughed out loud and had to explain that we were going over things we'd been doing for weeks. Then I felt I had stepped on toes by explaining our head nurse from week one was helping to advocate 'hands on' then class training. Most of what we did I felt we had learned and was already adapting to what worked best for Justin and us. Didn't mean to but I felt we may have offended.
From there we went into the TR portion---mostly tons & tons of paper work, resources, laws and 'future' contact after discharge. Whew----lots more to add to our collection of educational reading!!
Then PT started; I knew Beth was going to be the one to work us and work us hard. We are set again tomorrow for more learning with her, then again on Friday. We have one more 1/2 day class to attend and then we wait for when they want to transfer him to Augusta.
Each day changes here where VA is concerned and we finally had to explain that our housing time soon runs out and we have 'jobs' and obligations. We were advised they hope to know by Monday what will happen and when (another hurry and wait scenario). Amazing to have two facilities supposedly eager to have the same person----I pray the VA will want to turn him loose once they get him (the way Shepherd talks, I'm wondering).
Didn't get photos uploaded yet; will do my best to get some new ones done.
Love you all, miss home, think of you all often. Please continue to pray. Thank you!!!!
Sunday, September 6, 2009
Weekend update
Stats first.......Saturday his BP was 104/69 with temp of 97.2, Sunday BP was 135/64 with temp at 98.4. He's been average in respect that he hasn't been cold or needing blankets or jackets, etc. Later today he did end up in his hallway to warm up but they adjusted the temp in his room (funny, day was hot--room was hot, to everyone. Night getting cooler so the temp in the room was changed and getting cooler--go figure).
Not sure where to begin beyond stats. Amber visited this weekend then Brandon came up on Sunday for a visit. Of course, he had us (and I think I'm driving him bonkers with my fussiness and always asking if he needs help or whether he's doing what he should be or not). Hard lesson learned today is that I need to back off for more reasons than the obvious.
He's tickled that LSU won Saturday, he caught most of the game with it being such a late start here in Atlanta's time zone. We did a road trip to Wendy's for some frosties this afternoon. This evening seemed a bit down but he said it was 'just another day'.
He had some leg movements that he said he didn't think were spasms yet he wasn't doing it and wasn't able to control them, but they had him intrigued. The one thing he is truly excited over is that he can feel some sensation in the area that Doc said would make him do cartwheels when that full sensation came back. SO--he's had this 3 days now and can't wait to talk with Doc on Tuesday morning to see what his take on the matter is.
Oh, he got goosebumps earlier while we were trying to adjust his sitting in his chair. That seemed awesome to him.
This weekend was okay, good weather after the rain early Saturday morning decided to clear out (about mid-afternoon it turned out nice). He loses his roommate on Tuesday (or suppose to), he goes to day-program so not sure if Justin will ride out the next 10-14 days in the room by himself or if he'll get a new roommate for a brief time. Will know more Tuesday when they expect Justin's departure and update you all.
Hard to be objective and insightful tonight. It's been a lesson learning kind of weekend for me--wanting to do so much and then realizing that you aren't suppose to, like Mama Hen said---it's like watching your toddler learn to walk all over again-you want to hold them up the whole time but they have to fall and get scrapes and pout a few times but eventually they learn how to do it themselves. I had to come to that lesson the hard way!!
Of course, there will be lessons harder that mine that will have to be learned by Justin. I hope he knows how many people are standing behind him for all of his days!!
Almost forgot---he drank his frosty by himself, picked up the cup himself and drank it. He did get tired after about half way through but he did it himself!!!!!!! He has gotten so much better with everything he tries to do. Also ate a portion of his burger by himself, found a way to get it up in his hands and finished it off without assistance.
I've got more pics and will post them soon as we get them loaded off the camcorder.
Also, my Peetlebug had a very special friend make her some very special cookies---Llamas (sp?) and I will get a shot of them posted soon too!!!
For you Roll Tide fans, I hear congrats to you also.
Love you guys, appreciate you all, please remember us in your prayers as we continue to put you all in ours!!!!
Not sure where to begin beyond stats. Amber visited this weekend then Brandon came up on Sunday for a visit. Of course, he had us (and I think I'm driving him bonkers with my fussiness and always asking if he needs help or whether he's doing what he should be or not). Hard lesson learned today is that I need to back off for more reasons than the obvious.
He's tickled that LSU won Saturday, he caught most of the game with it being such a late start here in Atlanta's time zone. We did a road trip to Wendy's for some frosties this afternoon. This evening seemed a bit down but he said it was 'just another day'.
He had some leg movements that he said he didn't think were spasms yet he wasn't doing it and wasn't able to control them, but they had him intrigued. The one thing he is truly excited over is that he can feel some sensation in the area that Doc said would make him do cartwheels when that full sensation came back. SO--he's had this 3 days now and can't wait to talk with Doc on Tuesday morning to see what his take on the matter is.
Oh, he got goosebumps earlier while we were trying to adjust his sitting in his chair. That seemed awesome to him.
This weekend was okay, good weather after the rain early Saturday morning decided to clear out (about mid-afternoon it turned out nice). He loses his roommate on Tuesday (or suppose to), he goes to day-program so not sure if Justin will ride out the next 10-14 days in the room by himself or if he'll get a new roommate for a brief time. Will know more Tuesday when they expect Justin's departure and update you all.
Hard to be objective and insightful tonight. It's been a lesson learning kind of weekend for me--wanting to do so much and then realizing that you aren't suppose to, like Mama Hen said---it's like watching your toddler learn to walk all over again-you want to hold them up the whole time but they have to fall and get scrapes and pout a few times but eventually they learn how to do it themselves. I had to come to that lesson the hard way!!
Of course, there will be lessons harder that mine that will have to be learned by Justin. I hope he knows how many people are standing behind him for all of his days!!
Almost forgot---he drank his frosty by himself, picked up the cup himself and drank it. He did get tired after about half way through but he did it himself!!!!!!! He has gotten so much better with everything he tries to do. Also ate a portion of his burger by himself, found a way to get it up in his hands and finished it off without assistance.
I've got more pics and will post them soon as we get them loaded off the camcorder.
Also, my Peetlebug had a very special friend make her some very special cookies---Llamas (sp?) and I will get a shot of them posted soon too!!!
For you Roll Tide fans, I hear congrats to you also.
Love you guys, appreciate you all, please remember us in your prayers as we continue to put you all in ours!!!!
Friday, September 4, 2009
Friday Update
Me again for those no longer upset with me for the delays this week.
Friday started early with a 6:30 wake up call for Justin. I showed up just in time for dress time and breakfast. He seemed in good spirits this morning and actually said he didn't even realize it was a full moon weekend. He said he was not at all feeling like he normally would, which is wanting to go postal on someone (ha)!! That in itself was good!!
Doc came in briefly and discussed a few things they want VA to test him for. He said they typically do their tests here at out-patient time but he felt it would give the VA something to feel they participated in and would give Shepherd a jump on things when he returned. Sounded good--we'll see what happens. Still have no specifics of if they've decided to call VA and when they intend to do so. Hopefully we'll get a chance at a sit-down with Queen Bee (Barb) on Tuesday and get a more detailed plan.
He rode the bicycle today--it's the one where they use electricity to stimulate his legs that work turning the pedals on the bike. He said it was interesting. His appetite with lunch was great then it was off to his PT/OT/TR Group which was painting a ceiling tile (about 18 inches by 18 inches). Justin is designing a tribal version of another tattoo (go figure) and looks pretty decent so far. He's got part of it drawn and painted; had some difficulty with getting the pencil design of the rest of it done but didn't seem to mind it's taking time. The paint session seemed to turn into a 'jam' session with some music and "air guitar". Sam is a younger fellow in his group and he is hilarious (a younger version of Justin as Robyn calls him). Between the two of them, they kept us and some of the therapists laughing so much that the 2 hour session flew by.
We did another brief push pass to CVS for some more junk (like he needed anymore, restocked his Vitamin water and came back). He spent about an hour and a half teaching Robyn some chords--tabs and chords---"Smoke on the water" and "Simple Man". Her fingers are hurting but she seemed to enjoy it. Justin said it got him so excited that now he wants his hands back so bad so that he can jam out with her while he's teaching her.
His BP came in at 110/76, he's been 'warm' all day. Atlanta weather was cool and breezy early then warmed up but on days we think are smoldering, he's cold. Days where we say the temp seemed to be nicer, he's complaining how hot it is. I told him we needed to get his thermostat readjusted. His temp came in a super 97.6 (he said it's abnormal but it's actually normal---he, dad and Robyn all usually have between 97.6 and 98.6 temps).
A TMI moment--he can feel some sensation in his 'private' area---he advised me today that's how he knew the nurse had made a mess on him earlier this week. Because he could feel the "temperature" of the fluid in that area. I'm continuing to think any sensation he feels has got to be a blessing. He and another patient had a small collision earlier and he said it was awesome; he said he actually felt a jolt of tingling sensation when his foot hit the other guy's chair.
We continue to look at so much he tells us as miracles and steps to improvement.
He did another food outing (Firehouse Subs---they are pretty good, especially coming from me, I don't do bread well so I usually don't do subs, the Philly Steak & Cheese with hotsause was amazing). Good food, good group--it was fun, fresh air with outside seats and everyone came back miserable. We gave it up with him around 7:45 and he said he may call it quits early himself. We're doing laundry and Robyn is about to fall asleep from getting in so late (had an accident on the interstate that left her sitting an hour and moving all of 2 miles) then back up early this morning. She pulled a double so she's tired from work, ride and all day with Justin. BUT it was a GREAT day as she put it!!!!
For everyday we feel overwhelmed we are given one that reminds us of the blessings, friends, support and improvements made and yet to be made.
I needed this kind of day...................will get some pics loaded as soon as I can get them transferred from phone to laptop. I told Robyn that next time, I'm remembering the camcorder and doing an actual video not just still photos!!!
Love you guys!!!!! Thanks for the thoughts and prayers.................
Friday started early with a 6:30 wake up call for Justin. I showed up just in time for dress time and breakfast. He seemed in good spirits this morning and actually said he didn't even realize it was a full moon weekend. He said he was not at all feeling like he normally would, which is wanting to go postal on someone (ha)!! That in itself was good!!
Doc came in briefly and discussed a few things they want VA to test him for. He said they typically do their tests here at out-patient time but he felt it would give the VA something to feel they participated in and would give Shepherd a jump on things when he returned. Sounded good--we'll see what happens. Still have no specifics of if they've decided to call VA and when they intend to do so. Hopefully we'll get a chance at a sit-down with Queen Bee (Barb) on Tuesday and get a more detailed plan.
He rode the bicycle today--it's the one where they use electricity to stimulate his legs that work turning the pedals on the bike. He said it was interesting. His appetite with lunch was great then it was off to his PT/OT/TR Group which was painting a ceiling tile (about 18 inches by 18 inches). Justin is designing a tribal version of another tattoo (go figure) and looks pretty decent so far. He's got part of it drawn and painted; had some difficulty with getting the pencil design of the rest of it done but didn't seem to mind it's taking time. The paint session seemed to turn into a 'jam' session with some music and "air guitar". Sam is a younger fellow in his group and he is hilarious (a younger version of Justin as Robyn calls him). Between the two of them, they kept us and some of the therapists laughing so much that the 2 hour session flew by.
We did another brief push pass to CVS for some more junk (like he needed anymore, restocked his Vitamin water and came back). He spent about an hour and a half teaching Robyn some chords--tabs and chords---"Smoke on the water" and "Simple Man". Her fingers are hurting but she seemed to enjoy it. Justin said it got him so excited that now he wants his hands back so bad so that he can jam out with her while he's teaching her.
His BP came in at 110/76, he's been 'warm' all day. Atlanta weather was cool and breezy early then warmed up but on days we think are smoldering, he's cold. Days where we say the temp seemed to be nicer, he's complaining how hot it is. I told him we needed to get his thermostat readjusted. His temp came in a super 97.6 (he said it's abnormal but it's actually normal---he, dad and Robyn all usually have between 97.6 and 98.6 temps).
A TMI moment--he can feel some sensation in his 'private' area---he advised me today that's how he knew the nurse had made a mess on him earlier this week. Because he could feel the "temperature" of the fluid in that area. I'm continuing to think any sensation he feels has got to be a blessing. He and another patient had a small collision earlier and he said it was awesome; he said he actually felt a jolt of tingling sensation when his foot hit the other guy's chair.
We continue to look at so much he tells us as miracles and steps to improvement.
He did another food outing (Firehouse Subs---they are pretty good, especially coming from me, I don't do bread well so I usually don't do subs, the Philly Steak & Cheese with hotsause was amazing). Good food, good group--it was fun, fresh air with outside seats and everyone came back miserable. We gave it up with him around 7:45 and he said he may call it quits early himself. We're doing laundry and Robyn is about to fall asleep from getting in so late (had an accident on the interstate that left her sitting an hour and moving all of 2 miles) then back up early this morning. She pulled a double so she's tired from work, ride and all day with Justin. BUT it was a GREAT day as she put it!!!!
For everyday we feel overwhelmed we are given one that reminds us of the blessings, friends, support and improvements made and yet to be made.
I needed this kind of day...................will get some pics loaded as soon as I can get them transferred from phone to laptop. I told Robyn that next time, I'm remembering the camcorder and doing an actual video not just still photos!!!
Love you guys!!!!! Thanks for the thoughts and prayers.................
Thursday, September 3, 2009
Apologies
My apologies to you all for not having posted this week.
Our early departure was not medically related and I'm sorry if I led anyone to believe so. We were rather blindsighted with some other issues that are relative to Justin but on more of a behind the scenes, taking care of business matter.
Justin didn't get his treatment for the tendonitis on Monday---machine was broke. He did get a PT related massage and said it made him feel better. Not 100% but better. He finally got his treatment on Tuesday and they have indicated there are a few more treatments he will need in order to feel that he is improving.
While we originally thought he was due for a September 15th transfer to VA, we have once again been advised that Shepherd has postponed calling the VA. All we have been told is that they want him here as long as possible and that Justin has not yet met all of his "goals" and his progress has been so remarkable, they want him here. It all seems like paper-pushing and politics but based on so many people we've had that have voiced concerns, I'm wondering if the longer he puts off VA, the better----I hope it won't backfire!! Shepherd is the best in the nation; I just don't want the military side of things to get into a pissing match over who has rights over Justin. I want his best interest looked after without making enemies along the way!
Still on the condom cath, still having reflex---can't be explained why. He's got a new nursing crew on him the last few days. One yesterday got informed real quick by Justin that he wanted to be changed after she allowed part of his bladder during an IC to spill over into his lap. She commented that he only had an hour or so until they would get him in bed, so he asked her "how would you feel about sitting in your pee for 10 minutes"--she said she wouldn't like it, so he said "why should I have to for an hour"---I think she got the message!
Sorry to all of you nurses, he said he 'dislikes' (I replaced his words) new crews---having to start all over getting them to understand he knows what he needs or what should happen, having to relearn who knows what they are doing and who is actually "stupid" (his words) or just there for a paycheck. I'm sure it has to be frustrating getting into a routine then having to feel like you're starting all over again. At least his Doc, PT/OT/TR and counselors remain the same through all of these journeys.
BP has been average and he continues to be cold, even though tonight he didn't want his LSU blanket. I asked three times (of course, I always over-ask then realize he said No the first time). I worry too much (ha)! Everyone says he's doing fabulously!!
He's got a full day tomorrow then does a 6-9 outing at Firehouse Subs. He seems excited about that--he said they have a Philly Steak Sub that comes with a 'special' hot sauce that you put on it but you have to specifically ask for it to get it. His mouth was watering already just telling us about it. I hope that Sub is as good as he believes it will be.
Doc said all of the vitamins he had Dad go buy wouldn't hurt. He tried making the argument that he was getting the same in the food he was getting but Justin managed to ask him if getting supplements was a bad thing. Doc couldn't argue. He said they were all good for him and that he just needed to make sure he was only doing them once per day. Justin feels like he won another battle (he did a lot of research for each vitamin and was pretty insistent that they would help not hurt).
Oh, thanks to the packages he's received, he's stocked with Angels, inspiration and junk food (thank you Deidra and Brandon & Aunt MaryBeth and Uncle Ken). He received all the goodies sent by all of you. Del Sis--he said just looking at the bag of goodies you sent would make a person sick, fully loaded bag of chocolate. I put the Angel hanging above his bed on the light that hangs above him. And while he's still having problems turning his own pages in a book, I will help him out with the book you sent. And when I can't I know Stan the Man will. He's been reading the book that the nurses from Dothan gave to Justin. He says it is his inspiration everyday and he takes super care of Justin.
Also, Aunt Lydia and Uncle Keith---we haven't told him what surprises you guys are sending up. Unless Amber has spilled the beans, should be more to inspire.
He's drinking more Vitamin water. Said his 'research' shows that the Zync flavored water and something else (I forgot the name, it's supposed to have 50% of ALL the vitamins---like taking a Centrum Silver) are awesome. The child scares me sometimes with how much he listens then adds his own version of what will help!!!
I will try to update again tomorrow and apologize again to everyone. Without all of you, we would not have the many blessings we've received and continue to receive.
We love you all and continue to remember where our strengths and encouragements come from.
Our early departure was not medically related and I'm sorry if I led anyone to believe so. We were rather blindsighted with some other issues that are relative to Justin but on more of a behind the scenes, taking care of business matter.
Justin didn't get his treatment for the tendonitis on Monday---machine was broke. He did get a PT related massage and said it made him feel better. Not 100% but better. He finally got his treatment on Tuesday and they have indicated there are a few more treatments he will need in order to feel that he is improving.
While we originally thought he was due for a September 15th transfer to VA, we have once again been advised that Shepherd has postponed calling the VA. All we have been told is that they want him here as long as possible and that Justin has not yet met all of his "goals" and his progress has been so remarkable, they want him here. It all seems like paper-pushing and politics but based on so many people we've had that have voiced concerns, I'm wondering if the longer he puts off VA, the better----I hope it won't backfire!! Shepherd is the best in the nation; I just don't want the military side of things to get into a pissing match over who has rights over Justin. I want his best interest looked after without making enemies along the way!
Still on the condom cath, still having reflex---can't be explained why. He's got a new nursing crew on him the last few days. One yesterday got informed real quick by Justin that he wanted to be changed after she allowed part of his bladder during an IC to spill over into his lap. She commented that he only had an hour or so until they would get him in bed, so he asked her "how would you feel about sitting in your pee for 10 minutes"--she said she wouldn't like it, so he said "why should I have to for an hour"---I think she got the message!
Sorry to all of you nurses, he said he 'dislikes' (I replaced his words) new crews---having to start all over getting them to understand he knows what he needs or what should happen, having to relearn who knows what they are doing and who is actually "stupid" (his words) or just there for a paycheck. I'm sure it has to be frustrating getting into a routine then having to feel like you're starting all over again. At least his Doc, PT/OT/TR and counselors remain the same through all of these journeys.
BP has been average and he continues to be cold, even though tonight he didn't want his LSU blanket. I asked three times (of course, I always over-ask then realize he said No the first time). I worry too much (ha)! Everyone says he's doing fabulously!!
He's got a full day tomorrow then does a 6-9 outing at Firehouse Subs. He seems excited about that--he said they have a Philly Steak Sub that comes with a 'special' hot sauce that you put on it but you have to specifically ask for it to get it. His mouth was watering already just telling us about it. I hope that Sub is as good as he believes it will be.
Doc said all of the vitamins he had Dad go buy wouldn't hurt. He tried making the argument that he was getting the same in the food he was getting but Justin managed to ask him if getting supplements was a bad thing. Doc couldn't argue. He said they were all good for him and that he just needed to make sure he was only doing them once per day. Justin feels like he won another battle (he did a lot of research for each vitamin and was pretty insistent that they would help not hurt).
Oh, thanks to the packages he's received, he's stocked with Angels, inspiration and junk food (thank you Deidra and Brandon & Aunt MaryBeth and Uncle Ken). He received all the goodies sent by all of you. Del Sis--he said just looking at the bag of goodies you sent would make a person sick, fully loaded bag of chocolate. I put the Angel hanging above his bed on the light that hangs above him. And while he's still having problems turning his own pages in a book, I will help him out with the book you sent. And when I can't I know Stan the Man will. He's been reading the book that the nurses from Dothan gave to Justin. He says it is his inspiration everyday and he takes super care of Justin.
Also, Aunt Lydia and Uncle Keith---we haven't told him what surprises you guys are sending up. Unless Amber has spilled the beans, should be more to inspire.
He's drinking more Vitamin water. Said his 'research' shows that the Zync flavored water and something else (I forgot the name, it's supposed to have 50% of ALL the vitamins---like taking a Centrum Silver) are awesome. The child scares me sometimes with how much he listens then adds his own version of what will help!!!
I will try to update again tomorrow and apologize again to everyone. Without all of you, we would not have the many blessings we've received and continue to receive.
We love you all and continue to remember where our strengths and encouragements come from.
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