Transplant Day 91 and feeling cooped up

Patrick woke up while I was taking Brian to the airport and so the nurse let him come to the door of his room to play so he wouldn't feel alone
Patrick woke up while I was taking Brian to the airport and so the nurse let him come to the door of his room to play so he wouldn’t feel alone

I’ve written before about how crazed Patrick gets when he’s stir crazy and feeling healthy in the hospital. Stir crazy and tired and steroids make this even harder. It’s cold and flu season and the hospital is quite full and we ended up being admitted in the last room they had the day we arrived and most of my past couple of days have been spent trying to help a feeling-better Patrick not explode from being cooped up.

This takes many forms. Sometimes is TV marathons. For the first time in Patrick’s life, I know the PBS and Disney Channel TV schedules. Just because that gives us some variety from the DVD’s that we have all memorized by now.

A couple of days ago, it was a trip to Walmart’s clearance shelves. I stumbled into a school supplies clearance sale that got me glitter glue and stamps and dry erase markers and a bingo dauber and a clipboard with storage. All of that adds up to some of Patrick’s favorite ways to play.

Yesterday morning, it looked like an exercise and dance party in the room. I turned on some mp3’s of songs that Patrick and I used in mommy and me exercise class and made him work his little body until he was really tired and insisted on sitting down. Favorite quote from the music therapist, “I’ve never seen anyone learning to samba in their room.” Yup, I even was teaching Patrick Brazilian street samba that I learned from the portuguese foriegn language immersion house college.

Thank goodness this hasn’t relied just on me. We’ve had lots of volunteers who have pushed through when Patrick was too tired to think or play. We have visits from music therapy and feeding and occupational therapy. We have nurses who give him extra time when they can. And up till yesterday, we had daddy.

I was very grateful for the volunteers in that regard. It is hard to have had my husband and best friend here but barely spend any time with him because we were stuck in a hospital room. Volunteers appeared at just the right time for me to a carry out dinner hosted by the Hilton at the RMH. (Which is always fancy and amazing). It was almost like a date. And yesterday, another gave us the chance to go have lunch together. It was 60 degrees and we snuck out to he patio.

Yesterday, we wore Patrick out thoroughly and then put him down for a nap. Then, I drove Brian back to the airport. At least I got to see him off this week. And he’s got a lot to do at home because still none of these setbacks have anything to do with complications of transplant and so the idea of coming back home looms closer and closer.

I’ve learned two things about that subject lately. I used to imagine that when they said recovery here for a year that it meant that there would be a set of goals that needed met. Well, it turns out Patrick is meeting those goals with flying colors. If he’d had some rejection or needed more hospital recovery time at first, that would have kept us here earlier. But really, it’s the little things that keep you here. A virus you catch. An unexplained swing in medication. A suspicion of rejection. Otherwise, you hit your diet goals and gain weight and you go.

But that doesn’t mean you stay home, either. There are 3 other transplant families living long term at the Ronald McDonald House. One is newly transplanted and has been being told since Christmas that they’d go home next week. But a little thing goes wrong and they add one more week. Week after week. Another has been home a few times, but their son will have problems crop up that bring them back and they have been back and forth for 2 years. And the last went home quickly with no problems and lived wonderfully with their graft for years, only needing an annual checkup.. But a year ago, she fell and it damaged her graft. She eventually lost it and just lost her 3rd transplant.

So, see, anything can happen. We could be home soon and stay, or think we’re coming home but not make it for a while, or we could be back and forth. What I do know is that we will be back here.

Anyway – medical update. Still no one has told me formal biopsy results. But when we asked about them yesterday, the response was “You haven’t heard? I’m pretty sure it was no rejection.” So I guess that is that. His belly seems back to normal and yesterday we pushed for them to advance feeds faster. They are going up 10 cc’s every 8 hours and so far, it seems he is doing great with it. Plus, he’s back to eating again. And amazing me by chewing and swallowing more and more foods. We hope that he’ll reach full feeds and be able to go to the Ronald McDonald house by the weekend. He’ll do another week of ulcer medication. (They tried to let me off the hook on this and I pushed to say that I really don’t mind giving it.) And we’re switching from ranitidine to a PPI (prevacid) which took some negotiation to get covered by insurance, but I think we finally got it.

They say Patrick isn’t contagious anymore, but hospital policy still requires he stay on precautions till he goes.

This gives us more confidence taking him back to the Ronald McDonald House. This go-around of being sick there has been awkward. To say the least. One of the other transplant patients also caught the virus, then his mom did.. and so there was panic about an outbreak in the house. I hear that others were sick, but only those of us with immune suppressed kids spoke out about it. (Because we know that hiding you’re sick just gets more people sick.) Unfortunately, that means that there were a few families who are newer at this who really panicked about the risk of catching it and, because norovirus isn’t airborne so handwashing was the only precaution the team advised, decided that we weren’t being careful and were the reason others had caught the illness. It meant some very awkward conversations and angry stares and other really uncomfortable treatment that made us feel like we were lepers living in society when, in fact, we were being so much MORE careful than circumstances required.

It is going to be hard to go back. I have some wounded pride I need to work through. I’d better work on it, too, because this isn’t going to be the last time we have some conflicts about illness and immune suppression. Hopefully, I’ve learned a little bit of empathy. Or at least, I hope this has taught me a little more tact. I am going to be on the protective side more often and know I’ve accidentally been offensive myself.

And really, there is some comfort for us in having made it through an illness here before going home. To know what illness and immune suppression is like, at least to some degree.

Oh – meanwhile.. Patrick seems to have gone through a growth spurt. His diapers don’t fit him the same way anymore. (problem is they don’t stock pull-ups for the inbetween between pediatric and adult diapers.) And when I hold him on my lap, he feels HUGE.

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