Day 97 - Sept 5, 2008

Today I pretty much crashed. I came home for a nap at about 2:30 and slept for 4 hours until Breezy woke me and I decided to just stay home and take care of some business (laundry and unpacking) and try to catch up on some sleep. I hate leaving him for this length of time, but I am just so exhausted that I know I need to sleep or it will be worse in a few days.

They ended up not being able to do the swallow study today because Kevin was vomiting all morning. They changed his type of food last night to one with more calories (his food is just like baby formula) and it doesn't seem like he is able to handle it. They put it back to what they have been giving him and he seems to be tolerating it well enough. I know we need something with more calories so we are going to have to figure out what he can tolerate. He is down to 112 pounds and being that he is just shy of 6 feet tall, that tells you how thin he is.

I put my foot down and we got his compression garments on for his burns today. His body was starting to 'tattoo' (where the burns turn purple and red and are raised up from his skin, kinda puffy like - and it can be permanent if the clothing is not left on 23 hours a day). We also had a company come in and measure him for permanent clothing instead of temporary 'isotoner glove like' stuff. It took almost 2 hours to get all of the measurements because the clothes are taylor made to compress his skin. We already had some of the clothes for his arms and hands, but one of the nurses threw some of it out not realizing it was clothing.

That pretty much covers the day so I am going to end with answering some questions from the comments.

Kevin - you asked if he is playing any games and so far he really isn't. They haven't done much with him this week as they are all still getting to know his situation. You also asked about the tv and his preferences. I can't say he's had much time to watch tv this week, but as soon as he heard the theme music for the show "Cops" - his eyes got big. I left it on and he appeared to watch it. I really wish they had some music stations here, but they don't. I need to take his cd player tomorrow - I was trying to wait until we get him to his permanent room but it's taking too long.

You also mentioned his frustration level at not being able to communicate. I can't imagine it. When I think about him not being able to talk or convey what he feels - it breaks my heart. I think it would literally drive me mad. I will say though that he has no trouble telling us to back off, but there is no way to tell us much else. He does lift his hand in the classic "I don't know" gesture when he doesn't understand us and it's also obvious when he is frustrated - he starts crying and shakes his left hand like you do when no one will listen to you. I can only hope that someday he can communicate with us fully. It will be the worst thing if he never can.

Christie - thanks for letting me know I messed up the date again, lol. I truly never know what day of the week it is or what the date is. I have to look every night when getting ready to post.

Jessica - you are exactly right. I pretty much lose control if I think about the son that I had. The funny kid that always was smiling and joking and carrying on. If I remember him like that - I cry. To get through my days, I have to pretend that I never had that son. I have to look at who I have now and see how far he has come in the last 3 months. That is the only way that I can keep going. ( I hope you are ok?)

Ya know - I never in a million years would have thought our lives would be like this. This is so not what I envisioned my kids' lives to be like. Or mine, to be honest. This, quite frankly, sucks!

(sorry everyone - it's just been a very emotional post)

And I updated our addresses. I put Kevin's on there too as he can get mail now.