Many of you know that Ian is receiving care at The Children's Hospital of Philadelphia (CHOP). He visits the surgery department and the gastroenterology specialists. These GIs are a sub-specialty in pathology and motility. They have offered many new ideas and suggestions that other medical providers have not. We like them very much.
Over the last few weeks, since out first visit there in November, Ian has been experimenting with various feeding regimens. Currently, we are using the backpack and he is doing three 7 hour feedings each day. He gets one hour off in between each, leaving him attached to his backpack-pump 21 hours out of the day. He has acclimated well and has been down this road before. He is a little clumsy and unsteady at times, but will only get bigger and stronger and continues to improve with this.
He is trying a new food, Peptamen JR, which is made by Nestle. It is a Rx food and is whey protein based. While Ian does have a milk and soy food intolerance, he seems to do better with the whey than casein. This is due to the fast gastric emptying it provides in comparison. He is still "no food by mouth" (NPO) by choice. We have messy play with food and continue to provide opportunities for him to play with and experience foods. He will place foods into his mouth and sometimes play with them, but does no chewing or swallowing.
The surgeons say his Nissen Fundoplication (fundo) is still very new and much healing is yet to take place. The surgery was done 9.21.2011. Another large component of all this is simply prematurity. The GI tract does not mature until week 37,38 and with Ian being born in week 29, he missed much of this time. Hopefully, it will catch up in the future and he will no longer need the tube. No one can tell us yes or no on the longevity questions. The ball is in Ian's court. It is our job to include him in as much occupational therapy and feeding-speech therapy as he requires to make advances.
Our current obstacle now that the Fundo has taken care of the vomiting, is retching. He continues to "vomit," but since he can not at this time, he retches and gags. We were at about a dozen times daily, but with the help of Benadryl, we are down to once or twice daily. Who knew Benadryl suppressed the vomit reflex in the brain. Apparently, there very well could be a central nervous system component that causes hyper-sensitization of the visceral lining in the GI tract. Ian also takes an anti-spasmodic medication to help with the "cramps."
Along with the vitamins, Prevacid, Probiotic, and lung medications, he seems to be improving, slowly. We will visit CHOP again on Wednesday of this coming week, with the surgery department. They run a Post-Fundo, reflux clinic with one of the top surgeons for these issues in the country. I look forward to what he, his nurses, and dietitians have to offer. This will be our first meeting with them.
Look for updates!