Transplant Day 18 and a quiet milestone

Sometimes you reach an enormous milestone only to find it horribly anticlimactic. Today, because it’s Monday, a new attending surgeon came on duty. He came in, heard Patrick was 15 cc’s away from his feeding goal and said, “let’s get him off TPN today.”

So, after turning up feeds all morning, Patrick’s nurse came in this afternoon while he was napping, flushed his line and turned off his TPN pump. After 6 years of total TPN dependence, Patrick doesn’t need TPN. Right now he’s getting all of his nutrition in the form of enteral feeds. (Enteral means to the belly.) That moment seems like it should have been bigger.

If you're not used to looking at IV poles, you might not notice that this IV pole has 2 big differences. There is no yellow bag of TPN. And the IV pump is turned off.

If you’re not used to looking at IV poles, you might not notice that this IV pole has 2 big differences. There is no yellow bag of TPN. And the IV pump is turned off.

Patrick’s food is now super elemental (simplest form of protein so easy to digest and hypoallergenic) formula called Vivonex. A pump helps run it through the g-tube into his stomach. Eventually, we hope he’ll learn to eat. But for now, feeding through his stomach instead of by IV is a huge step.

He still gets a few ounces of hydration by IV a few times a day, but otherwise that pump is turned off.  He’ll keep his central line till we’re really sure he won’t need it. Just because getting a line in is so hard for him.

A music therapist came by to sing and play music with Patrick this morning.

A music therapist came by to sing and play music with Patrick this morning.

With the feeding goal met, we are now working with the pharmacy on getting set up for Patrick’s many, many medications. One of the most expensive ones isn’t covered by our insurance in its liquid form. We are working on a requesting patient assistance and/or appealing the coverage because, well, if you saw the price tag on this drug it would make you feel a little bit sick, I think. They want me to pick a local pharmacy. How do you do that in a city you know nothing about?

The other big accomplishment of the day is that we backed way off on Patrick’s pain medications. We dared start tylenol again, so it’s time to wean off of the narcotic. Brian ordered some Blues Clues DVD’s (because we were getting more than a little sick of watching the same episode 10 times a day.) He turned them and then set a goal… after every episode, Patrick was to go for a walk. Without his walker.

This got better as the day wore on. The only time Patrick struggled was after laughing really hard when his meds had worn all the way off.

Patrick took most walks just holding a hand today instead of a walker.

Patrick took most walks just holding a hand today instead of a walker.

Why was he laughing? Well, they had a troupe of clowns visit the hospital today. And, well, it turns out that clowns doing slapstick humor is right up Patrick’s alley. He belly laughed the whole time. It was awesome! Thanks to Professor Jerkelle, Basil and Wheels http://www.geocities.com/pieclown .. All that laughing left his belly a little too sore to walk. But with some pain medicine and back in bed, Patrick took an awesome afternoon nap and all was well.

Patrick and the troupe of clowns who kept him laughing and paying attention for a full hour.

Patrick and the troupe of clowns who kept him laughing and paying attention for a full hour.

So a big day, but so quiet for such a momentous occasion.

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