Well, we made it through the weekly dilations! We did skip one week, but made up for it with an extra one yesterday. The surgeon says that his stricture is looking great. He's been able to get it bigger than ever before. The positive side for Andrew is that he hasn't been getting food stuck in his throat. He eats, and eats, and eats. He's been doing so well that we have not had to do tube feeds! He got a cold a few weeks ago, and didn't eat or drink for 4 days. We did use the tube to keep him hydrated during those days. He lost .4 kg during that week, but gained it all back this last week. The next step is to now do dilations every other week.
Andrew took it on himself to be tube-free, literally, this weekend. Friday we traveled up to stay with my family for the weekend. When I took Andrew's shirt off that night, his tube was gone! The hole had closed and scabbed over! I had heard of kids pulling their tubes out, but I really couldn't comprehend how they would pull the balloon through the stoma (hole in the skin for the tube) without some severe pain.
I called the surgeon, and he said that there is always still a very small hole open and that he could dilate the stoma when Andrw was in for his esophageal dilation Mon. So today the tube is back in place, and has plenty of water in the balloon. It would have been nice to just leave it out, but since we do still need it when he's sick we'll keep it around for a while. Ryan found the tube tonight and there was not as much water as there should have been, there was still water in it.
With Halloween coming fast, I was starting to think of costume ideas for the boys. Grandma Shell took care of it for me though! She had picked up some costumes on clearance last year that fit the boys. Andrew's is a horse. It looks more like a cow, but it's cute either way. Tyler's is a green dragon. He cried the first time we put it on him. Once we pointed out the awesome tail and wings, he warmed up to it. Now he wears it everyday! As I type, he's wearing it while he watches "Wonder Pets". Hopefully he won't stain or rip it before trick-or-treating.
Ryan and I did get a date this month, and even hired a babysitter. We went to the ward adult cook-out. It was a nice little break. We're hoping to get a more regular date pattern worked out.
Oct 5, 2010
Tube Free! -for a few days
at 8:14 AM
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