Thursday, August 2, 2012

A plan!! (but don't get too excited)

Well we have a plan! It's not the most inspired or even fully informed plan in the world, but it's the first dang plan we've had. Today James started taking pancreatic enzymes and we will see if it helps. I have started PICC line training which is a little scary to take over full responsibility, but there's lots of nursing help. We plan to go home Monday or Tuesday with the tpn and that's kind of where the plan ends. It's actually a pretty sorry plan.

Anyway, it's all we got. We will follow up after that outpatient and keep 'chipping away at it' as Dr Anderson said. Lovely.

James is happy but missing his sister and daddy. As do I!!

I celebrated my 30th birthday here the other day. Not what I would choose, but my whole family came with amazing Mexican food and a cake for a party in the cafeteria. I ended up missing the entire thing because that's when all the doctors that we had waited all day to speak to finally showed up. But I do think James had an awesome time with his cousins and likely thought it was sort of his birthday too. He asked for an airplane. The following morning Tom flew back to VA again. So I'm totally claiming a do-over. When this is

So while there's still so much we don't know, and some things we suspect but aren't jumping on til there's confirmation, we did finally get confirmation that he is not absorbing all of his food. Two years ago he seemed to gain weight according to how much he ate, which wasn't much. He gained awesome weight on TPN then and now. After he started eating again here, his TPN was decreased to about 50% of his needed calories because he was eating 85% of his total needed calories orally. Initially I was upset they decreased his TPN because he stopped gaining weight and I figured it was because he wasn't eating as much as normal. But then what we realized was he was getting a lot of calories, so he certainly should have been gaining weight. This proves that he is not properly absorbing through the gut! And then this leads to the pancreatic enzymes and on down the line of stuff we don't know yet.

Finally, information is coming in, it's just that so far no one really knows how to put it all together.

Please keep the prayers coming!!

Playing with plants outside.

Eve hugging Daddy in her bday dress!

A real pickle.

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