Today has seemed like a long day! Some days just drag more then others and today seemed long (but not bad).
On a good note all three of our very favorite nurses worked today so Alex was as happy as could be to have "his" girls around. We also have several friends that are inpatient with us so we have been visiting. Andrew is here having a muscle biopsy to diagnose a mitochondrial disorder and Nicholas had a new tube placed. Alex loves having friends around to play with.
We saw Dr. Pacheco today. She is our allergist immunologist and is also doubling as a pulmonologist right now. She came to see Alex's rash and talk about his risk of aspiration. For his rash we are going to add another medecine. We are already doing benadryl every 4 hours and hyrdrocortisone cream so we will add one more. She will also recheck all his immune labs. As for pulmonary had we continued feeding in the G tube their recommendation would have been to have the reflux surgery, but because we are feeding i the J tube he is not refluxing so we will not need to do that.
Dr. koenig, Dr. Pacheco and Dr. Rhoads (GI) met and they do not feel that we wuill ever feed into the G tube again. Alex's motility is so poor and his reflux so severe that it is not worth it. They have also decided that we will not let Alex eat any food for the next 3 months. At that point we will reassess whether to let him have his 4 foods back. Alex has completely stopped asking to eat, but I worry about going to playgroup and parties and out to eat with no foods. I am sure Alex will prove me wrong for worrying he is always so amazing.
He continues to charm his way through the days. With a smile on his face and a giggle for his friends.