Tuesday, May 11, 2010
Let's say that things haven't exactly gone according to plan, the New Orleans plan that is. As I mentioned in my previous post, about a week into the trial, Noah started having major retching and this continued for over 3 weeks. He lost a lot of weight and wasn't tolerating any of his tube feeds. I was communicating with Dr. Hyman throughout this ordeal and he became very skeptical that this was NOT from a virus and was more inclined to think that Noah is not a candidate for his trial after all. He stated to me that Noah was the first in 50 trials to have a poor reaction. He was insistant upon the fact that Noah should no longer be retching and should be able to tolerate much higher rates of feedings now that he was desensitized and on the medications. His last correspondence with me was to say that he thinks there might be something else wrong with Noah that he is not seeing, and it is too difficult to diagnose via email. His only suggestion was to add more pain meds to the ones he is currently on, one being lydicane, that would have to be administered in the hospital for safety. This is NOT something we were willing to do. He stated since we are not in the New Orleans area (or remotely close for that matter) that he wants to call off the trial and put the ball back into our local medical teams court. We were heartbroken, that he put an end to things so quickly and strongly felt that he simply gave up on him too soon. Brian and I spent the last weekend doing alot of talking and reviewing all of the things Noah has been through and tried in terms of feeding. The first thing we both agreed on, is that Noah's behavior has been out of control since we started this. His anxiety and meltdowns have been at an all time high. I think not feeling well, having significantly less nutrition, no structured mealtimes, and adjusting to new medications have all played a role in this change. The feeding team in Evansville and his OT here in town have been AMAZING at helping us troubleshoot. Dr Clawson wants to stick as closely to the Dr Hyman's protocol as we can, but within limits that Noah can handle. We have been able to work him up to his regular (pre-New Orleans) feeding rate at night (still through the J) and we have brought back 2 structured meal times during the day. He is currently getting about 75% of his nutrition through the tube and 25% orally. He is still retching with larger volume meals, usually anything over 4oz. We have discontinued the Amitryptaline but are going to continue on the Neurontin for the time being. He has had some very good days and some very bad days. He still tires very easily when eating or chewing anything more than smooth purees and tends to swallow things whole. We are still working on strengthening his jaw and facial muscles. I think we have just accepted the fact that this is going to take a long time, and that there is no easy button or magic pill that is going to take this all away. I am so very blessed to have some amazing CDH support families to share ideas, suggestions, and advice with. We are all going, or have gone, down the long and winding feeding road. As one mom recently pointed out to me, CDH kids have such complex issues, it's almost impossible to pin it down to just one thing. For now, we are sticking with what we know works for Noah and are accepting of the fact that it's going to take lots of time as well as practice, to overcome these feeding complications. I remind myself that not quite a year ago, he was almost 100% tube fed. We've learned to celebrate all the victories, not matter how big or small!