We are on the road heading towards home and we just got the call from Minnesota. They want to wait and see how the next few months go. If he has a lot of attacks in the next 6 months, then the surgery would be something they would do for him if we decided we were ready, but if he goes another 5 months between attacks like he did last time we can wait a while to make that decision. If anything changes with having pain inbetween or if he starts to lose endocrine function(insulin) in addition to his loss of exocrine function (enzymes which he already has to take for the rest of his life), then plans might change as well. I'm ok with this. We learned some new information and got answers to questions that other doctors would just ignore or BS us about. Right now his endocrine function is great and that function of the pancreas declines much slower than the exocrine function for people with atypical CF. That being said, pancreatitis and atypical CF affect each person differently. There are no definites or guarantees. His future (other than having to take enzymes the rest of his life) is one huge question mark. That was already the case because of his Autism Spectrum Disorder, but it is even more so now. I just hope and pray for his happiness. That is all I've ever wanted for him.
I will post in more detail soon after we are back into our daily routine and I don't feel like a zombie. Also, Shade starts 2nd grade in a couple of days, so I will have time to think then. Thanks for reading!
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