September 8, 2005
September 8, 2005 | Updates
Today was one of those pretty good days. Yeah! Last night as I thought and thought about Samuel’s feeding problems, I just couldn’t figure out what was wrong. He’s never been one to throw up a lot before. And everything shows that his stomach is emptying correctly. Even though he has shown signs of reflux on several tests, I just don’t believe he has it badly if at all. We all have reflux somewhat. And every test they do on him they do while he is laying down and they fill his stomach. Seems like all of us would have some reflux then.Anyway, I said my prayers last night and just as I said amen a thought came to me and I knew what to try. Most everytime Samuel has thrown up it has been one of two things. Either he has thrown up right after the tube is flushed and it has just been stomach acids and water. Or he has been asleep and woken up to throw up. So I think they were flushing his tube with too much water too quickly after each feeding. And they were running the feeds by the force of gravity instead of through a pump so they were going into Samuel’s stomach quicker when he was asleep than when he was awake. We’ve know for a while that when he is awake and posturing he puts a lot of pressure in the tube making it hard to get his medications in there. So we changed two things this morning. First, he will be flushed with 10cc’s of water before and after feedings instead of 40cc’s. And they will run his feeds through the pump instead of by gravity so we can regulate the speed they enter his stomach.
All the feeds went well today. He did spit up a little tiny bit during his last feed, so I put him up in his chair until the bolus feed was over. I’m sure sitting up makes a big difference.
The doctor this morning verified that his lungs did show some pockets of fluid, but they were small and his lungs actually looked better than the last time they x-rayed them which was when they think he aspirated his own saliva. That tells me that he is protecting his airway better now even with all the throwing up than he was a month ago when there was only saliva for him to aspirate. They are not going to treat him with antibiotics unless his fever comes back. So far, it looks as though he’s going to get over this on his own. He sounds much better today than he did yesterday and he is coughing more than I have heard him cough since we got here. That’s actually a good thing because he is clearing his lungs out himself.
They did an ultrasound of his kidneys and bladder and all looked fine. So the put in a catheter that will remain in place for a few days to give his bladder a break. Hopefully, that will help his urinary retention.
This afternoon as he fell asleep, his eyeslids were twitching as he moved into deep, dream sleep. A few minutes later, I walked in the room and he was smiling great big smiles in his sleep. He did it about 4 times and asleep or awake, it brought me quickly to tears since I haven’t seen that smile in a month or so. The nurses even came running in hoping to get a glimpse of it. They all love him so much and cried when they saw me crying. They’re great.
We changed his pump back to a continuous dose and raised it from 1300 micrograms a day to 1350. As long as we don’t see any negative side effects, we’re going to try and go up some more. Samuel still isn’t to a point that he can even begin to relearn things because he is still to taken over by the constant posturing. We need to see if we can calm it down more so he can be more attentive to things around him.
Samuel had a pretty good day himself. He did sleep quite a bit, so I hope he sleep tonight also. I was leery to wake him because I figured his body was working on getting rid of his “cold”. But when he was awake he was fairly calm and pretty attentive.
We’re getting excited to come home soon. Keep little Samuel in your prayers!
Love,
Teresa, Tom, Samuel & Boys
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