The only problem with children is they grow. Sometimes quickly. Little A is now 8 years old. Her homemade esophagus is a roller coaster inside her body. Where we see a normal esophagus under x-ray with ourselves her esophagus looks like the mine ride in Indiana Jones and the Temple of Doom, minus the big gap part they had to jump! (That video is just...crazy...I laughed at the coin sounds..) She also has stricture problems, sometimes, because she does not chew food properly when she is extremely hungry. Which lately is all the time. (Watches her eating chicken nuggets and shakes her head with a grin.) So, problems occur.
A stricture happens when the scar tissue where her homemade esophagus is attached at the throat, and somewhere down by her tummy, grow inward and make the holes too narrow to get food through properly. She has several areas that can show stricture. The throat, the stomach, and down in the colon. So far the throat has been the one that has had the most trouble. We even massage that area so that food pops! through the hole if it gets stuck. Weird, but hey, you get used to it. I can even feel out the spot to help navigate the food for her. That...sounds odd, but it works for us until we can see her doctor.
This week her Surgeon (a new surgeon since Dr. Bass moved on and we gained her replacement) Dr. Mark Holterman is going to go in for a look-see. He just wants to extend her neck area again with one of these because the scar tissue has narrowed: partay balloons in Little A's throat! but he also wants to check out that roller coaster ride of a esophagus and see what, or if something, needs done. Like a pull. The pull would mean that they yank out all the excess "esophagus" (colon) that has grown over the years to make it decently straight for her to have a direct line from mouth to stomach. If he feels it is necessary to do a pull he will call from the O.R. and let us know while she is under.
A pull at this age is a short term relief. In about six years she will need another pull done. That colon piece will be growing as she grows, and in it's natural state, like a colon. If a pull is done now, she will have a few years to go and another surgery will be necessary. We can only do this one appointment at a time. One month at a time. Things could change at any time. It can be an unbearable and heavy weight on you if you contemplate it too much or too often, though. I get happy for normal, crazy days. The alternative to those sucks!
Here we come Thursday. You better be ready for us!
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