Wyatt had a full day at CHOP yesterday. We got a call a few weeks ago asking for our participation in a new research study they are doing. They are looking more into the anatomy of the lungs of CDH babies, and whether or not they would benefit from certain medications to improve their lung growth/function. Unfortunately they weren't able to get most of the information they were looking for yesterday- Wyatt woke up in the middle of the test. We're hoping they will be able to change the protocal a little and let us come back for the rest of the test in a few weeks. He did get a good report from the Pulmonologist though- his lungs are functioning a little better than they were a year ago. He still recommends using the 2 inhalers twice a day. We also had a great appointment with Cardiology- his ECHO and EKG looked really good.
We came up with a plan to try to get him to start eating a little more by mouth at our list visit with Dr Blinman and Robin. At this point he is still getting almost 100% of his calories through his g-tube. The 16th of April was his 1yr g-tube "anniversary". It's a little disappointing to still be relying on the g-tube for all of his calories at this point, but hopefully the changes we are about to make will improve that. We are going to try to eliminate 2 of his bolus feeds during the day. That leaves him with the 3 he gets overnight and 2 more during the day. We are going to try to give him the 2 daytime feeds while he is napping so he's not aware of any of the feeds going into his tube. He's definitely really full from all his feeds through out the day but we are hoping some of it may be psychological, and if he doesn't see them he won't know he's being fed. He's at the point where if you tell him it's time to eat he lifts his shirt, rather than sit at the table. He will have to get a weight check at the pediatrician in 2 weeks. As long as his weight doesn't plummet we will keep trying until his next appointment in June. We also started talking about a feeding program in Hershey. Most kids have great results from their program, but we are really hoping we won't have to do this... cross your fingers for a good appetite!