August 23, 2005
August 23, 2005 | Updates
I haven’t deserted all of you! Sunday was an OK day for Samuel. He did seem a little more upset than usual, but not enough to call the doctors. We still think he is trying to adjust to the changes they made in his medications.Monday morning, Tom came to sit with Samuel while I took the kids school shopping. We got a lot done and had a fun time doing it. Then the kids headed back home with Tom to get ready for school to start.
Samuel did wake up Monday morning with some kind of a rash and a little bit of a fever. They weren’t necessarily too concerned and they seem to think it is related to an alergic reaction to a medication or maybe the detergent in the sheets or something. A little benedryl seemed to clear it up and the fever subsided quite a bit. They again ran tests to check for infection, but nothing showed up.
Saturday, Sunday & Monday nights, Samuel went to sleep between 8 and 9 pm and woke between 2 and 4 am. He doesn’t like to go back to sleep then and often stays awake until his morning meds at 8 am and the takes a nap then. We’d like to see that improve so that he sleeps through the night.
I also have noticed that Samuel is doing something “different” than I have seen before. He started doing it Saturday. It reminds me of something he was doing in the intensive care unit just a few days after the accident. He will pucker up his lips, clench his teeth together, roll his eyes partly back up into his head and then stare into space and hold totally still for maybe 30 seconds or so. He does not posture during the episodes and does not seem to be coherent. I think they may be seizures and have asked the doctors several times about them.
Today, the “seizures” were worse. He would get upset and start crying and his face would get really red and then his eyes would roll into his head and he would open his mouth wide and look like he was going to gag. Then his lips would pucker up and his eyes would roll partly into his head and he would stare straight ahead. All the while, he does not posture but is very relaxed. They last a few minutes and have happened at least 7 times that I have seen today. I again approached the doctors and they indicated that they would do an EEG on him tomorrow to see if he is, indeed, having seizures.
Last night, he had an episode at about 11:30 pm where his oxygen dropped to about 80 and then again to about 70 (5 minutes later) and then again much lower than that (about 5 minutes later). The third time, they had a difficult time getting his oxygen levels to return to normal and he turned pale and a little blue. They gave him oxygen and his stats returned to normal as they woke him from a very deep sleep. He has been fine since. They are again blaming the meds and have stopped his oral baclefin along with the medication that helps with Parkinson’s disease. They also reduced his pump baclefin during the day and raised it during the night to try and help him sleep. Otherwise, they are trying to do a better job of staggering his meds to keep him from getting sedated by any one of them.
They have scheduled the G-tube surgery for next Tuesday and are planning on doing a reflux study on him either tonight or tomorrow night. That will determine whether or not he will get a Nissen where they sew the top of his stomach around the bottom of his esophogas to keep him from refluxing or throwing up. So we will see on that.
Last of all, the car wash my sister held this past Saturday was a great success and a lot of fun. We want to thank her and her softball team and my kids for helping out with it and everyone that showed up! We especially want to thank the old guy out back washing tires and drying cars!
Thank you everyone for all you’ve done. Keep up the prayers and the optimism. I still have great feeling about Samuel and how well he can do. He’s a tough little boy!
Love,
Teresa & Samuel
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