Transplant Day 104 and Big news in clinic

Patrick had a clinic appointment today. Brian actually got to come with us. (Yes, the team cleared him and his cough.)

It went about like this.

We arrived and visited with all of our transplant friends in the waiting room because it was transplant clinic day. They called us back and grabbed a set of vitals. Then they showed us to a room.

Patrick, who stayed up early, got up late and didn’t nap proceeded to run around the room getting into everything he shouldn’t.

The nurse coordinator came in and went of Patrick’s medication list and asked us if we had any new concerns. I think we told her we wanted to follow up on the suggestion that Patrick might be allowed home this month.

She left. We moved all the gloves up high on the wall so Patrick couldn’t play with them.

The dietitian came in and we talked about Patrick’s current diet and how he’s tolerating feeds. We discussed how much he’s eating, his upset stomach of the past 2 days, and what the next step for feeds would be. She also told us that we could change his rate when his gut settles down to give him a 4 hour window.

Then I asked her what her goals and criteria were for him. What she wanted to see to feel like he was doing well enough to go home. She said he seemed to be doing really well. He’s gained 5 pounds since transplant. He is continually doing better with eating.

She said that, from her perspective, he is ready to go. But that she doesn’t like being the one to make that call. Then we talked about how diet would be managed once Patrick was back in Utah.

She left. Patrick’s behavior went bezerk. We put him in time out and he started throwing a major tantrum.

Then the team came in.

It was not surgeon we’d heard was running clinic who we’d hoped to see. I thought, “well, maybe we won’t discuss this this week after all.”

Thankfully, Patrick settled down. He said the phrase we’ve been rehearsing with him. “I want to go to my home.” They kind of didn’t answer.

So I told the doctor about Patrick’s strange gut this past few days and how I wondered if it was something he ate or the leftovers or Norwalk. Then I asked if the labs looked good, thinking that maybe I was being overly optimistic. Nope. Patrick’s labs look great. No dehydration. Even with things seeming off, he’s in a good place. His Prograf level needed a slight increase.

Then the nurse coordinator turned to the doctor and asked, “So the big question is, can they go back to Utah?” And you know what? The doctor said yes.

I can’t remember his exact words. I was so stunned. Basically, he knew we’d discussed it in rounds several times and knew what had been offered and that Patrick was meeting those goals.

So, we asked about logistics like setting up homecare and planning for Patrick to go back to school. (That answer scares me. They said to start planning for him to go to school. I am trying to figure out how to wait out the last of cold and flu season.) And I asked a couple of my other random questions.

And the nurse coordinator said she’d call me tomorrow. And they said to come back in a month.

And that was it. We walked out feeling like we’d cheated the system somehow.

So we are working on plans to go home. We’d like to leave tomorrow afternoon if we can to stay ahead of a storm that’s due to come in. That would put us home Saturday night or Sunday Morning. We are renting a van to take stuff home in and I will drive Patrick in the car.

Brian planned the trip. I called the insurance and Patrick’s doctor back home.

We celebrated valentine’s and Patrick’s sealing anniversary early by going out for dinner.

We went shopping for snacks. Then we packed up all our clothes.

We never count on something promised to us without expecting things to go wrong. It is possible that homecare won’t get arranged and we won’t be able to leave till after Monday. Or that Patrick’s gut really will be sick, not just confused by so many cheerios. Or the weather will turn bad. Or something.

And it’s kind of taboo to talk about going home until you walk out the door. So we aren’t coming home yet. We are just making plans to come home.

What a surprise.

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