U of I Hospital

Mason had another scope done on Monday April 5th, 2004.
The Dr. wanted to see for herself what it looked like. Mason had been on a ventilator since last Tuesday after they did the first scope at Mercy. And along with the vent came lots of heavy drugs to keep him still. He is now off the vent and going through withdrawals from those drugs. How very upsetting it is to watch this process. Yesterday was a very bad day, he didn't know who we were. We have also had to relearn how to eat from a bottle. Which is going very slow. But we will have a speech therapist work with him on that. We are doing fine with it ourselves, but maybe they can teach us something else that we need to be doing instead of what we are. Now, this brings me to today. We were suppose to have another scope done and part of the lump partially removed with a laser today. With this procedure, comes a very hard decision we need to make. If Mason has this surgery, he will have a tracheotomy also. This means that he will have a hole cut in his throat and a tube placed in that hole so he can breathe. This is a precautionary measure, because if we don't trach him, and the lump grows back very fast, he could have a bad breathing spell and possibly die if he doesn't get the right treatment right away. So if we are at the park or something and I don't get him to a hospital in time, then.......well, you know what I mean. And I want to avoid that as much as possible. Right now since he has had his scope on Monday (5th) he is doing very well on his own. That is due to the steroids that he is getting. The steroids help keep the swelling down in his throat, and I think it is keeping the lump at bay. Why don't we just treat with steroids you ask? Well, long term use with steroids, will affect his hormones that help him develop and grow. So, which of the lesser of the two evils do you take? For the time being the doctors want to keep him and observe him before we do any kind of surgery. We know the surgery is eventually going to happen, however, we want to see our little boy again before it happens. In order to do that, we have to wean him off his drugs, which we are doing now and he is going through his withdrawals. It has been much better today, we have at least seen a glimmer in his eyes, and is somewhat responding to us. We had a music therapist in here a little bit ago and she sang lullabies and had a little rattle, and some jingle bells for him to play with, and he did very well, he followed the bells and listened to the singing. So he is coming back, slowly but surely. That is all that I have for now. We will keep updating as much as we can.