This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.

December 1, 2007

Sunday, June 20, 2010

24 hours and no spit up. Good news. Michael hates the new feeding schedule. Bad news. He thinks he is hungry all the time. We're going to try to make every other meal a little bit bigger and the other meal a little smaller and see if that makes him happier.

Some of the nurses still seem to be a bit concerned that Michael was trying to eat too much, and the new food schedule is so much better. I couldn't disagree more. He is eating about as much food as he is supposed to have, based on his weight and based on he fact that he is eating higher-calorie food. The volume would be much, much greater if he were eating unfortified food. As far as eating every other hour goes, it really is not appropriate for his age. Plus, with the reflux, it is really limiting. He eats, which takes at least half an hour, and then he has to sit up (or stand) for at least half an hour. Then he gets at most an hour off before it all starts again.

It is frustrating for all of us, but AT LEAST we know that it possible to get him through a day with enough food and no puking. This means that we should be able to get a stable post-op situation for Michael. The wild cards that we haven't been able to work through so far are: what happens if he cries for an extended time and swallows a lot of air? What happens if he coughs a lot and gags himself? Both of these things happen to Michael with some frequency, and both could easily happen after surgery. Hopefully we can keep him calm and comfortable, but it will be a challenge.

The other challenge will be the arm restraints. We have read that they will be part of our lives nearly the entire day for 3 weeks. We still have to talk to the doctors about what they expect in this regard, so we don't know if what we are reading will apply to Michael's situation. Some kids can take their restraints off under close supervision, but it isn't likely that Michael will be able to. The kids that don't have to wear theirs are those that aren't likely to put things in their mouth. Michael, on the other hand, has his fist or one of his thumbs permanently inserted in mouth. He also chews his blankie. If he doesn't have artificial restraints, he will need parental ones.

Well, I need to wrap this up. Michael is thinking about waking up. He didn't take a morning nap, and his afternoon nap has been waaaaayyyy too long to bode well for a good bedtime. There is no nurse tonight, so we NEED a good sound sleep tonight (especially because we have to get up twice to feed him just for starters).


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