Our trip to Boston was tough. I think that Mark and I have always had a good handle on Kyle medically, I have always trusted my instincts with him even when he was in the NICU...long before we would get blood work back saying he was sick I would know..Ever since Kyle started to have seizures last year and was admitted to the PICU I've had this pit in my stomach. Knowing that something just didn't add up, Kyle was diagnosed with dumping syndrome and we started to treat for that, what concerned me was that the only symptom we had was his hypoglycemia, nothing else. We were sent home on more medicines and told that he HAD to learn to eat by mouth. It was pushed and pushed on us until we also began to believe that we needed to get Kyle into an intensive feeding clinic. A few months ago Kyle had an scope placed through his esophagus into his belly to see if we could see anything that would be causing all the belly pain he has. At this time our GI dr told us that his Nissen wrap (that he had to have corrected 4 times) was to tight and that she had a difficult time getting the probe through...she briefly mentioned another surgery may need to be done to correct this before Kyle would be able to eat. We didn't think to much about this, at the time we were so focused on getting Kyle's dumping syndrome under control and his lungs healthy we foolishly put it on the back burner.
Fast forward to Boston , and the motility specialist telling us that Kyle's wrap was WAY to tight and that surgery was not an option, it would be much to risky. He also told us not no food could pass through it and they weren't sure how long it would take for the wrap to loosen up or if it ever would. For those of you that know our story you know that gagging and retching have been a problem for Kyle since birth, he has now been on continuous feeds (20 hours a day through his G tube) for months now...when he's not on his food he's in a alot of pain. The doctor explained that he shouldn't be gagging on continuous feeds and that clearly something is not adding up, he also doesn't feel like Kyle has dumping syndrome and is concerned that his body is now just so used to the food that it reacts that way when we take the food away.
We are still waiting for our scheduled date to go inpatient at Children's the motility dr will place a probe in Kyle's g tube and run it down through his intestines and we will be able to tell what is working and what isn't...we may also leave with a g/j tube which is a tube that will run into Kyle's jejunum (intestines)..There was also mention of going on TPN, but we hope to avoid that since Kyle would need a central line for that and we don't' have very good luck with those...
So that's it in a brief overview...I had a few days of being sick over some of this information and it hurts to think of the lifetime results of all his stomach surgeries, but I'm trying to be hopeful we are in the right place for now and we can get Kyle the relief he so needs and deserves.
Love
K
