When I arrived in the room this morning, Patrick was sore. He had woken up in pain during the night and he did NOT want to get up. He didn’t want a bath. He didn’t want to walk. He had overdone yesterday and was tired.
However, about half an hour after I got him a bath, clean clothes, some tylenol, a heat pack and then coaxed him into his wagon, his physical therapist Kirsten showed up. Because of the success of yesterday’s Blues Clues game, we decided to try it again. That was motivation enough to get up. Patrick was hunting clues when the transplant team showed up for rounds. We walked right through rounds several times this morning, much to their delight.
Kirsten also showed Patrick that there is a mailbox on the outside of the playroom. She made him some pretend letters and they played putting them in and out of the box. (Making him squat and reach.)
Well, after therapy, Patrick was tired and decided to sit in his wagon and play games on his cell phone. It lasted for a while and I was able to make a few important phone calls and then Patrick was ready to get up and move again. I agreed to help him play Blues Clues one more time. Well, we got out in the hall and the social worker came by to talk about some questions I had. While we talked, Patrick got bored. And so he started to just wander around and play and… well, he realized that there was no reason for him to be staying in bed.
So, Patrick got up and started exploring and playing in his room. He played till 3 and cried when me made him stop to nap. Then he slept for 3 hours straight. (Yes, all that play wore him out.) Anyway… it’s nice to have our adventurous little boy back. And also, that is probably the end of our quiet peaceful days in the hospital.
Medical updates from the day: In rounds today they told us that the ulcers seen during Patrick’s scope might just be irritation from all this new gut has gone through. They are not worried.
They started adding some saline solution to Patrick’s feeds today, which increases the volume of his feeds. We hope that it will make it so he doesn’t need IV hydration. We just need to see if he can tolerate the extra volume in his feeds. So far, so good.
In other GREAT news, we found out today that Patrick has gotten pending approval for patient assistance for his antiviral drug, Valcyte. This one is only covered by my insurance in pill form and, uncovered, its price tag is over $1000/month. This approval is temporary and requires that we appeal the insurance company’s decision. However, it is a HUGE weight off of my mind.
And on that note, let’s make tonight’s educational series about medications. Patrick is going to be on a variety of medications as a result of his transplant. They include:
Prograf: To prevent rejection. At first, these are going to be very high levels, which means he will be very immune surpressed. The days of letting him lick the sidewalks as part of childhood are over. We are trading that in for lots of isolation and hand washing and mask wearing. He’ll be on this the rest of his life.
Prednisolone: Is a steroid that also prevents rejection. It also suppresses his immune system. It makes him grumpy and impulsive and sometimes makes it hard to sleep and makes his face a little bit rounder. And he won’t be on this long-term. These two drugs make it so Patrick can’t really control his anger. He’s happy most of the time, but when he’s not, the only way to help is to walk away because being there just feeds the crazy feeling. This has been hard, especially at night.
Valcyte: This protects him from a virus called CMV or cytomegalovirus that is almost unnoticable in you or me but has serious repercussions in people with surpressed immune systems. It’s crazy expensive but also crazy important given how much of Patrick’s immune system they wiped out. He’ll need it for at least a year.
Bactrim: An antibiotic to prevent pneumonia. He’ll need this till they back off the immune suppression.
Penicillin: Another antibiotic he’ll be on for his entire life because he doesn’t have a spleen.
Ranitidine (or Omeprazole): to reduce acid and his digestive system heal. He may need this for life.
Norvasc: To help fix the high blood pressure all these other drugs cause. He’ll need it till this problem goes away.
Lasix: Because for some reason, Patrick’s body likes to hold onto too much fluid since transplant. Just needs it till the problem goes away.
He’s also allowed Tylenol for pain. (But no ibuprofen again.) He’s also given a multivitamin in his formula. And some sodium bicarbonate (baking soda) to keep his CO2 levels right. And some saline solution for hydration. And right now, he can have a medicine for nausea.. but hasn’t needed it in a few days.
He can’t miss doses… But honestly, this is a much easier sounding regimen than I imagined it would be in our pre-transplant training. Just every 12 hours and keeping track of a few due only on certain days. The pharmacy team has come a couple of times to train us on all this… But even they have decided that our experience makes this not all that difficult compared to what we are used to.
Patrick Hoopes 