The Switch

we had stayed with the hospital that Koa was born in for his outpatient treatment, for his short gut syndrome. while there he went from being on TPN and Lipids for 20 hours to 18 hours and then to 16 hours. His tube feeds bumped up to 15 mL per hour and he was getting bottle fed 5 times a day of about 20 mL. then we were told to try and get an appointment at Children's in Seattle for their transplant clinic and to meet with their head GI doctor. We called and were told that we would have to wait until January to first be seen, and we called in November, so with the help of his previous GI doctor, she made a call and even talked to the new GI doc and he got him in the following week. So we went to our first appointment with him and it was so different than what we were used to. We actually felt normal, in the sense that we could walk around with tubes and stuff and didn't get looks and extra stares. All of us were the same and were there for the same reason, to get our kids better from the best care in the region. So he changed up some of his medications, and stopped him flushing with Pedialyte due to him getting diarrhea. The next week we went and were so excited to go too!! This week we went up no his feeds to 30-35 mL 5 times a day and then went up on his tube feeds to 15-18 mL per hour. This was just the beginning...