The first thing I need to say is that we are so very fortunate to be surrounded by so much love and support. Our family and friends continue to rally around us and show their love in so many ways.
We are truly blessed to have found a Dr. like Dr. Koenig. She is one of a kind. She is a kind, compassionate woman who has complete trust in the parents of her patients and who also happens to be one hell of a doctor. She is able to explain so many things thatno one has been able to explain for four years. It is so reassuring to me when she can help me understand why a lab is off or why Alex's body responds in a certain way. when it makes sense it is just plain easier to take.
We are starting Alex's TPN tomorrow. It is much needed. Alex was down to 27.5 lbs tonight. I was appalled to see a 27 on the scale. We have worked so very hard for every hard earned pound and they fall off so easily. It will take us a long time to get those same pounds back on. We will be here at least into next week. Dr. Koenig does NOT want us to come home on TPN. TPN can be very damaging to the liver and kidneys. It is not meant to be used long term. They will be checking Alex's labs daily and making sure he is doing okay. Depending on how quickly Alex's belly responds to accepting feeds will determine how long we are here.
We also saw Infectious disease and dermatology. Both agree if we get any more spots we will biopsy them.
GI wants us to do one more test to sdetermine what we will do about the reflux surgery.
I think that is most of it for today. Alex was pretty quiet and lethargic today. He wanted to stay in bed other then the two walks in his stroller we took. Hopefully he will feel better once he starts getting some nutrition.