November 6, 2005
November 6, 2005 | Updates
Two weeks down - six to go. Samuel’s treatments are still going fine. He did scream through 3 of them last week, which was upsetting. But we have checked his ears and he is clearing them fine. We had a scare on Tuesday when I became concerned because Samuel was upset in the chamber and tighter and more arched than usual. I was worried that his pump had been affected by the pressure of the chamber and wasn’t working right. I had been told that it alarms if there is a problem, but that the alarm is soft and some people can’t hear it. So I put my ear next to his abdomen and I did hear something - like the chirping of a smoke detector that has a dead battery.I called the doctor to find out if there might be a problem. It took me nearly 4 hours to get ahold of someone who might know. And then when I told them what I was hearing and even how quiet it was, they assured me that it WAS the alarm, but that I should just come see them in the morning. I knew suddenly stopping the baclefin could be dangerous (even deadly), but they assured me he would be fine overnight. Needless to say, I didn’t sleep much.
The next morning, we hurried up to Primary Childrens hospital only to find that his pump was NOT alarming. But amazingly enough, none of the doctors or nurses there had ever heard his model of pump alarm. So they were “pretty sure” the sound it was making was just the sound it was “supposed” to make. Well, I called the maker of his pump and they assured me that his pump does make a “ticking” sound as it is working and that we would most assuredly hear the alarm if it went off unless we were in a really noisy room. They even played the sounds of the alarm over the phone for me so I would know how it sounds in the future. Crazy the doctors didn’t know all that, huh? Oh, well.
I worked Samuel’s tranxene down all week and last night I put him back to his regular dose because he was so miserable. I have emailed his doctor to ask for ideas on how to get him off the tranxene. I don’t know if he needs it or if he is just having severe withdrawals when I try to take him off it. It is very habit forming.
He is much calmer today and getting more and more aware as the days go on. He is babbling more and more and his right arm is fun to watch. I put his Smokey Bear hat on him today and he would reach up and knock it off his head. Then when I would put it in front of him, he would reach out and touch it. Mind you, they aren’t extremely controlled movements. But they are purposeful movements for sure! I have even seen him “grab” at things with his right hand. He can’t pick them up yet, but he is trying.
I am also sure that Samuel can hear. There is a possibility with a near drowning that although the ears work, the messages don’t make it to the brain. But Tom has had a cough all weekend and Samuel will visably start everytime Tom coughs - even if Tom isn’t holding him. Also, Samuel was laying on my bed today and I was in the bathroom getting ready. I looked out the bathroom door and he wasn’t looking at me. So I said, “Samuel, where’s mama?” And he turned his head a little and looked right at me. So I know he heard me!
His vision keeps improving each day. I now see him jump a little and close one eye if my hand is passing him and gets too close. He also is sleeping often without his oxygen. He made it most of last night without it. When he does have it, I only set it at 1/8 a liter. That’s the lowest setting the machine has. Samuel’s head control is slowly improving. He can hold his head up on his own for a few seconds at a time. And he can push on the floor with his arms and lift up his head for about that long also.
So thing are moving along - slow, but sure. We are excited to see even the smallest changes in Samuel. I don’t know if the changes are from the HBOT or just Samuel’s own progression. But at this point, who cares?
Keep up the prayers and faith!
Love,
The Jewkes
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