How My Son Got A New Liver: 5 Years Post-Transplant | The Amazing, Affordable Adventures of Mama, Bu
By B and P’s Mama, December 15, 2013 at 2:31 pm I have a very clear memory of signing the papers before Pip’s transplant. The doctor gave us a run-down of what we were signing – there wasn’t time for them to drop the papers off with us so that we could read them at our leisure. I imagine that when there is time, the discussion happens at a table or in an office. But we were standing at Pip’s bedside in a little huddle as the doctor said,
“This says that you understand that the anti-rejection medication he will need to take could destroy his kidneys – that he may require a kidney transplant down the road. This says that you understand that the medication puts him at higher risk for cancer. This says you understand that it may alter his appearance…..”
At one point, I interrupted and said, “But the alternative is that he dies, right?”
“Yes.”
“Then why even have the discussion?”
“Protocol.”
Fast forward through a case of shingles and a couple trips to the ER after midnight and lots of illnesses and missed days of school and occasionally elevated kidney numbers and worry over sun protection and germs and that one time I was certain he had melanoma….
By the time he turned four, Pip was pretty much leading as normal a life as he possibly could – down to only three daily medications, blood draws every 3 months, ultrasound and liver clinic once a year, playtime the rest of the time (and temper tantrums…and arguing with me about whether or not he has to wear socks.)
And then, around that time, Pip qualified for a study to see if he could be weaned completely off the meds. When the nurse who runs the study called, I shouted “YES!” before she could finish the sentence.
When your transplant kid starts kindergarten and plays soccer and progresses well in his swim lessons and has lots of friends and can speak in a British accent on command and breakdance like nobody’s business, it’s easy to figure that that’s just how it’s gonna be from now on. And then, when they begin reducing his anti-rejection meds and he doesn’t reject….well…you just sorta feel like you’re in the clear. But it’s not really like that. And I don’t mean that in a tragic way. It’s not tragic. It just isn’t as simple as being sick and then being well.
And so, Pip has spent 14 days in the hospital since September – 2 full-day procedure days, 1 day receiving IV antibiotics in the ER, 2 days inpatient for a skin infection, 3 days inpatient for surgery, 6 days inpatient for a blood infection. He’s had an IV placed in his arm 6 times since starting kindergarten, and he has a biliary drain leading to the outside of his body through his tummy, and he had a PICC line for 8 days so I could give him IV antibiotics at home.
Because, you know, that’s how it goes.
Pip had a build-up of scar tissue that caused a stricture in his main bile duct and had almost completely stopped the flow of bile into his intestines. So they ballooned it open and gave him the biliary drain and his numbers began to come down. But biliary drains can cause blood infections so he had one of those. But we took care of it. He’s back to his old self again.
And he may not have another complication. Or he may have a bunch. Who knows? But the good news…the GREAT news…is that the liver enzymes are normal again and he has entered the last phase of the study. The biliary drain will, we hope, be removed around March – just in time to get some more swimming lessons in before the summer.
It’s not, you know, “normal.” But there is every reason to believe (or, at least, to hope) that his 1st grade year won’t involve nearly so much hospital time.
And, you know, that’s just one little part of Pip. One little aspect of his life that he handles with exceptional grace. Some other things you should know about Pip are as follows:
When the food service lady would bring his lunch tray with the two chocolate chip cookies for dessert, Pip would say that one was for him and one should be saved for Bunny. On the day she only brought one, he told me to go ahead and save it for Bunny.
Pip has gotten pretty good at writing his letters now. His favorite thing is to write the names of his friends. There are papers everywhere that tell us who he’s thinking of at any moment.
Pip likes to snuggle more than any child I’ve ever known. He wants me to climb in bed with him and snuggle him every night when he falls asleep. In the morning when he wakes up, he asks me to lie down with him and snuggle before he gets up.
He also has the ability to leap onto me and climb me, like a monkey climbing a tree, all the way up until he’s sitting on my shoulders. It’s not my favorite thing but it is kinda amazing to watch, probably. He weighs 42 pounds now so he’s gonna need to stop that soon.
We had a dance party the other night and Pip suggested we dance the Tango. Bunny and I sandwiched him between us and we tangoed up and down the length of the living room again and again. Pip could not stop laughing.
Pip can stand on the edge of my bed and do a flip onto it and land on his back. I really hate that. But, again, it’s fairly impressive.
Sometime next week, I plan to clip Pip’s fingernails. It doesn’t sound like a monumental thing that is worthy of mention except that his anti-rejection meds stopped his fingernail growth. I have only clipped Pip’s nails twice in his life – when he was a baby. They haven’t grown in five years. But I looked at his fingers and there is paint under the tips of a couple of his nails (at least, I HOPE that’s paint.) If they’re long enough to harbor some paint, they might be long enough to clip. I find it exciting – and I’m not being sarcastic.
Pip had five monies in his treasure box and asked me to take him to Walgreens so that he could spend it. He got a tiny Lego Power Ranger figure that he paid for himself and then put the change into his pocket. When he got it home and opened it, it was the pink Power Ranger and he was a little disappointed because he wanted a boy one. He got over it really quickly and played with it happily but it made me get all teary.
All of those things – all of these wonderful things I can tell you about Pip – are possible because 0f the miracle of organ transplant. Post-transplant living is often compared to living with a chronic illness. Sometimes everything is good, sometimes you go through a rough spell. Pip’s had a bit of a rough spell. It may be over or it may continue for awhile. But it comes with the promise of good times ahead. And it’s a small price to pay for the opportunity to snuggle and tango and argue over socks, and peruse the toy aisle of Walgreens, and climb your mama like a monkey.
In this season of giving and thankfulness, I am eternally grateful for the gift of Pip.