So we sought a second surgical opinion a few weeks back. And now the date is set to have another Gtube procedure. It's scheduled for Tuesday (thank goodness for that nice vacation!). I think about his upcoming surgery. I think about how he may be down for weeks. How he liked pureed sweet potatoes at one point. And now has such learned aversions you can't get near his mouth without him gagging most of the time. Lewis' neurological control may change as he ages which might contribute to his oral feeding difficulties (either more or less). From a surgical perspective, his stomach will be like a mine field..... but it is our hope that this surgery will buy us some time so we can make him more comfortable with oral feeding. At least until he is old enough to be "taught" at one of the local feeding programs (Kluge or Kennedy Krieger Centers).
Just when you think he is making steps forward we take some back while we are at it. He'll probably be in the hospital for three days. It's even possible that if the gtube button won't work they will have to put the tube into his intestines... It makes me nervous thinking that all this progress he has made will have been for nothing being laid up with more surgery. He will not be strong enough for therapy for a little while. But I am reminded and tenderly assured that he is a trooper and will pull through it.
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