Today they put a drain in Kev's head and they are removing 15 CCs of fluid every hour. They plan to do this for 7-10 days and then, if he doesn't start absorbing on his own, they will have to put the shunt in. I am happy to say that the first day they drained fluid they sent it to the lab and so far - no bacteria has been found. I am a little concerned though because Kev did get a slight fever tonight and he hasn't had one for about two weeks now. Hope it was just a little bug or something.
And it was a real bummer - but his hands are back to being splinted and wrapped. Because he was so active with his left hand, he tore the graft off of his pinkie finger. This is the only finger now that has tendon showing (all the rest have healed). They have decided just to let it go and see if it heals on it's own, but he's gotta be wrapped now. And let me tell you - he really hates that. Tonight he kept rubbing his leg with the end of his splint really hard and I thought he was just trying to scratch that area and I looked down and he had worked his hand completely out of the splint and all of the bandages. I honestly couldn't believe it! This kid is gonna rival Houdini, I tell ya! Even the nurse was amazed.
I also had a chat with the ophthalmologist today. We are wondering if Kev might be blind out of his right eye. Obviously, we don't even know about the left yet either, but he does track movement with that eye sometimes. I am not sure if he does at all on the right side. We also are wondering if he is deaf on that side as well. It is possible for any of this because of the removal of the portion of the left side of his brain. I sure hope not, but I guess time will tell. I will say that when we stand on his right side - he doesn't even acknowledge us.
I am not sure if I mentioned the other night that Kev was taking his left hand and touching his right hand with it. It almost looked like he was trying to find out if it was there and if it would work. He was bending all of his fingers back and lifting it up and trying to move it. It actually broke my heart to see it because I just don't know what Kevin was thinking.
We also capped Kev's trach today, but he didn't say anything. It was so hard to be there when they did it. They told me he would have to breathe differently and it was just devastating to see the look in his eyes - like I was going to just let him die. It took quite a few breaths for him to get it right. It was just a horrible, horrible part of the day! We only left it on for about an hour and frankly, I don't want to be there when it goes back on. Babyish, I know...but I don't know if I can handle the look in his eyes again. (I will though because I would rather me be scared than him and I will just keep telling him how to breathe through it).
So that about sums up our day. It was kinda a quiet one because he was sedated from his procedure earlier in the morning. We mostly just sat in there with him and left him sleep. As soon as he would move we would just flock to his bed. Sounds like he has us wrapped around his little finger, doesn't it? LOL!
First 2 from the Nov kit!
5 years ago