The Siege---Augusta Style

As always, I must start this update with apologies for the delay. I know each of you have been such strength and encouragement to us and sincerely regret keeping you all from more frequent updates.

Monday found us doing our best to complete their training courses and getting updated on his tests (all but the blood work). His murmr was "nothing", his kidneys are odd but the overall picture says they are working super (odd being they claim one test shows something they don't typically see and another shows lower totals they are used to but when the overall picture is looked at---which we're told that the point--overall picture, his kidneys are working perfect).

The infection in his blood came back same as the infection in his bladder and they can't explain how that managed to go from bladder to bloodstream. They in a round-about-way tried to suggest it was possible he came to them with an infection and because they didn't culture him right away, it was able to worsen--result being the infection in the blood stream.

He continues to be on IV antibiotics but is much, much better. He told me last week was BAD. He and dad both crying trying to get through it all and he said he actually was very concerned he was taking a definite turn for the worse.

Mama Hen--we were told yesterday his hemaglobin was at 13.2 first week here and went down to 11.4 last week. They claim it is because of the infection and antibiotics. His platelettes were 138,000 and reduced down to around 114,000--also saying that is due to infection and antibiotics. She suggested putting him on 10ml of something that used to be used for depression but claimed it was now used for "neuropathy" (I think that is was she said was going on with Justin's feeling like parts of his body are on fire). He finally changed his mind today saying he didn't want to take anything that had a label pertaining to depression or anxiety or 'mental' issues. They have indicated they feel he runs a risk of getting another bladder infection which just makes us feel that they are pushing to keep him sick so they can keep him (paranoid I know but it's been a nightmare the last 2 weeks).

Dr. Rivers did, however, say that they will order a CBC (hopefully this week) to check his blood counts again.

During PT his cath came off AGAIN, completely off, so while changing and cleaning I found a small rash around his groin area which hasn't been there and found that his binder was on so tight that it "chorded" his abdomen area. His nurse treated both with some kind of cream and we found out back in the gym---when his blood pressure bottomed out---that she didn't replace the new binder tight enough, which caused him to get nauseaus and almost pass out. They couldn't even read his blood pressue with the machine until they figured out the binder wasn't on right, then it finally came back reading 99/57.

They forced him to swallow lunch fast so they could force him to go to the WalMart outing in a manual chair they PIECED TOGETHER. That wore him out big-time because no one is allowed to help them with anything. So, put him in a chair he struggles with because they refuse to listen to him say what kind of chair he can handle, make him go in public with the fear that his cath will not work again and he'll urinate all over himself and claim this is all for the sake of him becoming independent.

For anyone who thinks it cannot possibly be this bad, please know it is if not worse.

Truthfully, picture yourself sitting in a chair and knowing that you have no balance. Close your eyes and sit in a chair knowing that no one is there to hold you up and you're dizzy and struggling to keep yourself steady in that chair. Now picture someone who is standing, with eyes open and full control of their body telling you to sit up---I can't, yes you can, No I can't, yes you can!! Then you almost fall and that person has to grab you and says--whew, you scared me; you okay?? Did it scare you too, did it frustrate you that you tried telling that person you couldn't do it, did it make you fear that you came close to possibly damaging yourself even more?? This scenario is a small glimpse into the arguments and frustrations.

Help us pull your pants up Justin.....I can't; yes you can, reach down and help us. What part of have no trunk control and no hands do they not understand.

I can't even find a wash rag in his room when I need to clean him. There is no order to where are his catheters or anything else you might need. No towels in the room and because he leaks at least 3 times a day, they have to put an absorbent pad on his chair cushion and I think I've been swiping someone else's because I have no clue who they belong to but I know that I need one so I grab one.

You guys think we're strong---not so much as Justin having to endure this and keeping his sanity. You ask him today, "where we going" and he tells you "crazy".

I know the update doesn't make any of you feel better and it is with sadness we continue to report such dreariness. Thankfully, his fever is down and we are working diligently to get him out of this place.

What I know right now----his case manager Danielle gave a referral to Shepherd today and Shepherd is now working with Tricare to get approval to get him transferred back. We pray that we get that approval!!!!

Soon as we know something, I will update you guys (and I promise I will try my best to make that update as soon as we know something---not a 3 day wait).

We love you guys and thank you all and appreciate everything and so much more that is in our hearts!!!