We said goodbye to Porter's OT Cara yesterday. She's done great work with Porter and we will miss her very much! Porter enjoyed a cherry lollipop yesterday and put it all the way in his mouth all by himself!!!
Steve and I got to give Porter a sponge bath together yesterday. Porter is usually upset when he's getting a bath but with the two of us doing it he didn't cry at all, he just gave big smiles.
We received the green light from insurance today to move forward with evaluating Porter for transplant here at Texas Children’s. There is an extensive work up that takes place and a lot of people to evaluate Porter to decide if they will consider him a candidate here for transplant. We are still waiting on the chief surgeon to return to decide if he wants to try the myectomy first or if we should move straight to transplant but in the meantime we’re getting all the studies done for transplant so he can be presented to the Medical Review Board possibly next Friday. They will either decide that he is not a candidate, need more tests or that they do consider him a candidate here.
We met with the transplant coordinator, child life, and dietician today and anticipate meeting with the surgeon and social worker Monday along with infectious disease, cardiology, and probably some other folks next week.
Porter’s weight has remained the same so they increased his calories to 26kCal. We played on the floor all day today with lil P and did his trach care. He’s looking great on the outside and is still full of smiles!!!!