Yesterday at The Children's Institute.

Our visit to The Children's Institute yesterday went pretty well. They reviewed his most recent echocardiogram with us, and the hole in his heart (in the atrium) is still small and stable, and cardiology signed off on him with our consent. Awesome! The nutritionist tweaked his tube feeds so that we have him on more of a regular bolus schedule, with continuous feeds overnight, so that frees him up during the day more. She also gave us the recipe to start concentrating his formula so he gets more calories per ounce (22 instead of 20). It's just a higher ratio of powder. He needs more calories to grow now that he's active because of how hard he works to breathe. We also discussed his Ng tube. He has had it in for a pretty long time now as far as NG tubes are concerned. They are more of a short term thing because of the damage to the nose and sinuses. Pax has been on some form of antibiotics for the past 3 months thanks to the tube...his sinuses are constantly infected because of the irritation, and his ears get infected because of the drainage into the ear. It's a horrible cycle that leaves my baby miserable. So the next step is a G tube, which is a surgically placed tube (well, button valve, actually....you attach the extension tubing for feeds) that goes directly into the stomach. Each tube has it's pros and cons. But the G tube will allow him to be more normal, and give him more freedom. While I hate surgeries, this will allow him to play with his cousin, breathe easier, and feel better in general. G tubes have their downsides - infections (MRSA) at the stoma site, stomach acid leakage, granulation tissue....but they will be taken in stride just like the downsides we have encountered with the NGT. Tomorrow he sees his pulmonologist, and hopefully that will be our last appointment until we see the pediatric surgeon for his GT assessment.