The past couple days have been busy. They moved Link from the NICU to the Encdocrinology floor. Then they moved all of us to another room on the 5th floor so Jason & I could sleep here with Link. We're still on the waiting list for the Ronald McDonald House.
They took out the PICC line in Link's left arm & put a new one into his left foot. That was a painful process & I hate to hear his screams. :-( The other difficult thing was that they tried to draw his blood when his blood sugar was low & they couldn't get enough & he was screaming & he ended up getting so upset that his blood sugars rose & they ended up not being able to get the sample anyway. Not fun. They also removed the PICC from his head, which is nice :) Right now he is on 30% Dextrose at 18.5 ml/hr. That's quite a lot of sugar. And now he's having some intestinal issues. Poor guy. He has been pretty good overall, though. Love this little dude.
Today was a bit better than yesterday. The biggest reason is that we got some answers on what's going on with our sweet boy. The genetic tests are back. They got Link's test & it showed one genetic mutation. It took another day before they got the results back from us - the parents. But we JUST heard that the results show that the gene came from Jason. Which is REALLY good. That means that there is a VERY high chance that Link has focal disease instead of diffuse, meaning that they should only have to take out a portion of his pancreas instead of the entire thing.
Jason & I got to walk to the grocery store today. FREEZING! But so good to get outside finally & walk around & see all these beautiful old buildings. Also - Carrie Underwood stopped by CHOP today & it was fun to hear her answer the kids' questions :)
THANK YOU again for all the prayers & support! They have truly sustained us!