Getting settled at Primary Children’s

Arriving at a hospital on Thanksgiving morning is not the best of plans. Although we’ve been well taken care of, it took a few days before the regular hospital staff was all here and we could really start to get settled. But they’ve taken good care of him so far and we’re feeling a bit less like a family of fish out of water.

The hospital immediately started working on perfecting Patrick’s nutrition and have made regular adjustments to his TPN (iv feeding) and formula. He’s now eating 13 cc’s (maybe 3 teaspoons) of Elecare, which is a predigested formula. And, since Patrick loves eating, he still just gulps it down.

On Saturday he gave us a bit of a scare when his temperature shot up to approximately 101.9 degrees. It turns out that he’d gotten an infection in his PICC line. He’s been on antibiotics for a couple of days and today they pulled the PICC and switched his TPN to a periferal IV. (That means that it is in his hand rather than going in through a central line to his heart). He’ll have that until the infection can clear and then they’ll put in a Broviac line, which is a central line in his chest that’s a bit more sturdy so he can go home with it.

He also go quite anemic, especially when they had to start taking blood samples to check his infection so he had a transfusion this morning. His color us much better and he’s much more active and alert.

We have been getting lots of training on home care for him and are pretty good now at changing his ostomy bag… though I’ll admit that if one more person comes and shows me the same pictures of possible complications for a stoma, I might just lose my mind.

We have a care conference scheduled tomorrow morning. This means that the doctors and nurses and social workers and discharge planners will all sit down with us and we’ll talk about a plan for Patrick’s long term care. Our two main priorities are getting him listed for transplants and making plans for him to be able to go home with us until he’s big enough and an organ becomes available. After that meeting, we might be able to answer the question of when he’s coming home. I know a lot of our friends and family are dying to meet him and we appreciate your patience with us as we’ve been trying to get him settled and healthy here.

Sorry for a post with no pictures. Patrick’s due to be fed and I don’t have the time to get them off the camera. If I get a chance later this afternoon I’ll send out a post of just pictures.

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