Christmas and Post Christmas

We had an amazing Christmas yesterday. We slept in and opened presents at home, and then we had another Christmas at the hospital with Joey. Rowan and Claire got to open up a new round of presents thanks to the donations I spoke about in the last blog. I heard that Santa came to visit Joey’s room at 2  AM and he received a helix ball and a musical giraffe. Everyone is so generous to these kids at Christmas it touches my heart.

On the medical front, they weaned Joey’s vapotherm to a flow of four and he seemed to handle it quite nicely today. They kept him at an oxygen percentage of 28. Since they are weaning his drugs every other day, today they took a break from his wean. I believe he is still on Q 8 for clonodine. They are taking his lasix down to once a day instead of twice a day. His struggle right now are his dilated bowel loops. He seems to have a ton of gas which is why he has been so fussy. We have had to give him gas drops and today they used a suppository on him which seemed to give him some relief from the large bowel movement he experienced. They’re not really sure where the dilated bowel loops came from, but I really hate seeing Joey have to experience this. Gas hurts! I am praying that it’s nothing too serious.