We are back home after Nicholas' hospital stay. The CT scan on Monday showed that the shunt is working. He has a lot of swelling around the incision but I was told twice it is ok. I really don't want to go through this again any time soon. It is really hard to rest and recover at the hospital. He had a nurse, tech, and respiratory therapist come in every 3 hours so the poor guy never got any good sleep. It was hard on me too because I had to stay there the whole time. I only got 1-2 hours a sleep a night so it was really nice to be back home last night. One good thing about being there was we were able to try him off oxygen and be able to see his blood oxygen saturation. He was off it for about 9 hours and then de-satted while he was sleeping so he needed it turned back on. The RT talked to the lung doctor and he said if he goes 24 hours without oxygen we can discontinue it. We were told we can decrease his flow from 1/4 liter to 1/8 liter and turn it off when he is awake. We moved it to 1/8 but we haven't turned it off.
Baby Net, the early intervention program, came out to do paper work today. We have to wait for the early interventionist to call us in about 2 weeks to come out and do an evaluation to see what services, like physical therapy, he qualifies for. We have an eye appointment tomorrow. Next week is busy and we see his pediatric surgeon, lung doctor, and have the hearing screen. We will probably go see the pediatrician next week too. We should visit the NICU too since we will be at the hospital for his appointments. His primary NICU nurse visited him twice in the hospital and that made him so happy.
Nicholas seems happy to be home too. He is saying "ghee" a lot and is smiling and sucking on his hand.