Patrick is now 22 inches long and weighs a whopping 7 lbs 11.8 oz. Now, I understand this is small to some, but this means that he is just about out of his newborn size clothes… So right now, it’s HUGE to us! I can’t believe how well he’s growing. The doctors are pleased too.
The story of this week has been trying to get settled into a non-holiday routine. We had our last wonderful daddy-home days this week as the holidays came to a close. We went to bed early on New Year’s Eve because Patrick was willing, but still celebrated a bit when it was time for his midnight feeding. New Year’s day, Howie took some pictures of Patrick (just to see if the backdrop worked). We also watched a few bowl games and went to the mall just to have a warm place to go for a walk to help a bit with the cabin fever we’ve been experiencing.
While there, we bought Patrick his first church clothes. They’re overalls, of course, because that’s the best option of pants to protect his central line. And they’re also huge on him right now, since we bought 0-3. But I’m such a proud mama with a son wearing real clothes instead of just jammies all the time.
Medical milestones this week… They readjusted Patrick’s TPN (iv nutrition) to a 22 hour schedule instead of 24. This gave him 2 hours a day disconnected, which sounds pretty fun, but he’s decided is his preferred time for sleeping, so I don’t think he knows much difference. This week we go to 20 hours… we’ll see how that goes.
We’ve had to start doing a lot of replacement fluids this week. He doesn’t have the right portion of intestine to reabsorb stomach juices so he’s at a really high risk for dehydration. We keep track of all the fluids he loses and then calculate what he needs to have given back. Previously, we hadn’t been replacing much… But this week things got really high. That means one of two things. 1) He might be sick and just manifesting it differently. Fortunately, though, no fevers so far. 2) He might have just hit his limit for oral feedings. We’d been increasing things, and this might just be all that he can handle.
In other news, his labs this week are starting to show the beginnings of liver trouble… which we expected to see at one point or another.. so some adjustments may need to be made to the formula of his TPN. He’s also starting to be a bit anemic again. (Too much labwork required for a kid who’s not old enough to make his own blood cells). I guess it’s time for us to start praying that his body kicks in soon and his blood counts look better. Transfusions put the success of a transplant at risk, so if we can avoid another one, it would be ideal.
Mom and dad are doing fine… Just ever busy and ever sleepy. Fortunately his Christmas sleeper still works wonders and he isn’t up nearly as much at night.
Patrick Hoopes 