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................