Transplant days 53-54, insomnia, and Christmas carols

Photo Brian took while we were singing Christmas carols. Notice that when Patrick is tired he can't stop moving, hence all the pictures are motion blurred from this day.

Photo Brian took while we were singing Christmas carols. Notice that when Patrick is tired he can’t stop moving, hence all the pictures are motion blurred from this day.

Last night was a tough mix for us. Patrick slept the best he has in a week. Brian and I did not. As I put Patrick down, I noticed that there was some blood in his ostomy bag. An intestinal bleed could mean scary things for him.. But we also knew that it was Sunday night and not the most efficient time in the hospital. So we decided to wait and watch. And within an hour and a half the bleeding had stopped.

But for me, that meant setting the alarm clock every 2 hours during the night to make sure it didn’t come back. If that weren’t enough of a loss of sleep, at 4 a.m. Brian got up to go to the bathroom. Patrick woke up and insisted someone needed to lay with him. As much as I love the sweet little boy cuddles, Patrick hogs the bed.

We did finally all get to sleep, but unfortunately, Patrick had labs due this morning so when the alarm went off, I could only snooze it a couple of times before having to wake us all up.

After labs, we left Brian in the room and Patrick and I went downstairs to get him his meds and make his formula. The formula especially is quite a production to make. This morning, though, more than usual. While I was still working on it, the front doorbell of the house rang. I was the only one downstairs, so when it rang a couple more times, I went to answer. Turns out the girl from the office had locked herself out with a couple of people bringing by donations.

Well, Patrick sometimes bebops over and lets people in if they wait long enough. So he went and let them in. It turned out to be a family from a montessori school coming by to drop off some donations. They were waiting for the rest of the class, though, so they came in to wait. Then the bell rang again and this time it was people coming to put that night’s dinner into crockpots.

So here I am, in the kitchen trying to mix up Patrick’s 2.5 gallons of crazy complicated formula with people buzzing all around me making dinner. (And me telling them where to find everything.) And I look up and notice that there’s a little boy Patrick’s age that came over with the Montessori group looking bored but trying to be good. So I grabbed Patrick and went over and introduced him and got them a game to play together.

Eventually, the rest of the Montessori class arrived and they took some pictures together (and with Patrick.) And then my phone rang and it was the transplant team returning my call. And when I came back, Patrick had somehow gotten them to give him one of the gift bags that they’d brought along. As it happens, it was filled with Sesame Street themed things that we now find invaluable.. an Elmo bread crust cutter-offer and a couple of dry erase number and shape writing workbooks. (These happen to be the two fine motor practice things that i didn’t have in dry erase form.)

P.S. the doctors said that the apparent blood in the output was likely an anomaly and not to worry about it unless it came back.

We came back to the room to find Brian on a work call so I made a hurried effort to get Patrick his mommy-school readers printed for the week so we could get out of the way. We went downstairs and spent an hour doing mommy school. I could tell Patrick was tired then. He was happiest just snuggled up doing educational games on my computer.

And as the day wore on, he got more and more tired.

At dinner, we got to eat the chili that had smelled so amazing in the house all day. Then we tried going for a drive to look at Christmas lights. But I got us lost. And Patrick fell asleep. It was kind of a bust.

— picking up this post a couple of days later—

Patrick falling asleep wasn’t the greatest of things for him. He was still exhausted enough to be totally irrational. When he’s tired, the steroids kind of take over and all rational thought shuts off. We were all already tired, but nothing we could do would convince him to sleep. Brian and I went the rounds with him until 2 a.m. when Brian had him downstairs in time out for screaming in the middle of the night. I decided we needed to just find a way for the grown-ups to sleep so I drew up morning meds so we wouldn’t have to go out of the room for them. And then suggested we just turn on the TV for him.

Well, when Patrick saw the room, he decided he was ready to lay down again and went to sleep without much more fight. We slept till a little after 9 when giving morning meds was enough to wake Patrick.

It was kind of a rough morning. I don’t do well when I’m tired. I cry a lot.

But once we got past the morning, we were able to lay down and rest a little and that helped us reset. (Not sleep… just rest. We received several dozen.. maybe even 100.. homemade Christmas cards this week from a middle school, a primary, and Brian’s work so we sat down and read all of those.)

I called the team back one more time because Patrick’s output had been black looking during the night. They came back again and said his labs looked good and he didn’t seem to be feeling bad and that maybe it was the food he was eating. As in, the dyes in the food he was eating.. (That night instead of letting him have a cup of soup at dinner, I served him ham instead of soup. Sure enough, no funny colors.)

After dinner, though, we had something I’ve been looking forward to ever since I started playing the piano here. Our Christmas sing-along.  I spent the quiet moments in the day typing up and printing lyrics to several Christmas songs. We gathered up those of us in the house who’ll get together to do things like this. Plus, the sister missionaries came over. They had offered to come visit and that happened to be the only day that they could come.. and the best day for us to do the sing-along. I figured more voices could only help.

It was a lot of fun to gather around the piano and sing. Everyone was a great sport. We sang everything on my list, and then when we needed to fill some time before our next activity, we took requests. I hope everyone got to sing or hear their favorite.

Then everyone visited for a while and then went upstairs to work on a craft that one of the House employees had put together for us. Patrick and I really kind of enjoyed that while Brian drew up meds.

And then, Patrick laid down in bed and was asleep in about 10 minutes. I think I wasn’t far behind. Looking like we are going to need to explore a new phase in Patrick’s life. Giving up naps.

It is amazing to see how much this has made him grow up. Have I mentioned he also weaned himself from pacifiers? After 6 years and not knowing how he’d ever quit them… the hospital experience was enough to just make him not like them. I offered them back a few days after we got to the Ronald McDonald House. He tried them but didn’t like them. So I sat down and explained that kids grow up and then they are big kids and grownups and don’t like paci’s anymore. He thought about it and then said, “Me too, mom.” He was done. I told him that as soon as I get a chance, I’ll remove the pacifiers from his wubbanub friends and he’s great with that idea.

And that has nothing to do with anything except that I hadn’t told you. So that’s a summary of the hardest 2 days of the week. Next post, Christmas Eve.

 

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