Well, 72 hours since discharge as I’m writing this and I am amazed to say that today it seems we maybe hit our stride a little bit. Amazing, considering how out of control things still seemed last night.
Sneaking back into the room last night after blogging, I noticed the distinct smell of formula and knew that it meant that Patrick’s g-tube had come open and leaked all over him and the bed. That woke him enough that I gave in and crawled in his bed to sleep last night.
At 7, his pump alarmed, waking is both. It was an early morning, but meant we had time to get ready. It took some courage for me to figure out how to get Patrick a bath with his new ostomy without losing the pouch. Yesterday morning, I knew the pouch was about to fall off anyway so we tried it and, sure enough, I had to change the bag that afternoon. But today, we did a bath again and it was ok.
Putting Patrick in the bath helps mornings go much more smoothly than showers. It means I can leave him for a bit. For example, this morning I was able to get the bed stripped so it could be washed. Patrick is chilled so easily right now. I don’t know if htat’s because his hospital room was so hot for a month and the weather outside is so cold.. But he gets shivers all over at the slightest cold. So I’ve started wrapping him in two towels. His calls this his towel dress and it is the highlight of his morning.
Being up early this morning also meant I managed to get a shower in before the nurse came. And, amazingly, Patrick woke up feeling good enough to not need Zofran this morning. That will earn me an extra half hour of sleep every day.
I didn’t feel lost looking at Patrick’s meds this morning. I kind of know what he’s getting and when and how much prep to do in the room before taking them downstairs. So after labs were drawn, we went downstairs and gave meds and mixed formula. (Which I remembered to make with warm water so it dissolved better.) And then I made pancakes. That felt like quite the luxury. Patrick ate 2 bites. Turns out we don’t love sugar free syrup from IHOP.
Then I glanced at my phone and noticed I’d missed a call when I was in the shower. It was the transplant clinic asking if we could come in early for Patrick’s appointment today. So, we hurried off to run our one errand of the day, and then rushed to the transplant clinic.
I am used to doctor’s visits where the answer is “you’re doing as well as you can. Nothing can change till after transplant.” Instead, today things were moving. Patrick’s prograf levels were still high this morning, but for fear of swinging him the other direction, they are leaving his dose the same. That means that he gets to take the morning off of labwork tomorrow and have it done Saturday, instead.
Because he is tolerating feeds SO incredibly well, they are said that we can start giving him a break in his feeding schedule. We’ll increase his feed rate by 8 cc’s and he can have 2 hours off. If that goes well, then after the weekend, we’ll go up again and he’ll get 4 hours off. Because of the diproblems with his lungs, they will go very slow in transitioning him to a different formula. So he probably won’t gain much weight in the next little bit because he isn’t getting a lot of fat.. But slowly that can be reintroduced.
Alas, the formula that they often use next has milk in it, so we need to take our time going to a hyperallergenic formula instead.
And that’s that. We came home from clinic and tried to eat lunch. But Patrick was bored and sleepy, so he spent the afternoon napping and I have mostly just spent my afternoon laying here keeping him asleep… though I snuck out of bed to write this blog post.
I finally realized today that I can write the post in a word processor and then just copy and paste when I go in a room that has an internet connection. It might mean some delayed posting, but should be a little more effective than trying to get away in a room with internet long enough to write.
Follow-up added this morning after:
We were woken from nap by a phone call saying that dinner was ready. Patrick was still all over the place at dinner, but thankfully the crowd was small because he’d slept through the start of movie night at the hospital. Dinner is very overstimulating for him. So we usually retreat to our room early.
Last night, we had good incentive. We’d picked up a Christmas tree earlier and I finally brought it into the room. We set up the Christmas tree and hung the ornament he’s made thus far on it. Then went and made two more. I cleaned out the room a little bit more. I think we may finally be almost moved in. I can’t even imagine moving houses with a kid this age.
And then, we made it to bed. Patrick’s prograf levels must still be high because he just can’t fall asleep at night. Last night, he wouldn’t stop playing with his hands. I was really grateful for the chance to visit with an older transplant patient who is staying here. He explained that the prograf makes his hands shake, hurt, and even lock. Last night, Patrick wouldn’t stop playing with his hands. So I thought to ask him if his hands were hurting. The answer was yes. And so I laid there and rubbed his hands till he settled down. Then I told him I was just too sleepy to stay up with him anymore. I went and laid down and he was asleep in 15 minutes.
We slept in till 8 this morning. No labs today. It felt luxurious. And now we’re downstairs letting him play in the playroom. Which means a little bit of internet time for me.
Yesterday gave me hope. We had some downtime and I think that will get better the more used to this new routine.
Patrick Hoopes 