April is National Donate Life Month and Bunny, Pip, and I want you to be very aware because without organ donation and transplant, Pip wouldn’t be with us today.
More than 115,000 men, women, and children need life-saving organ transplants right now and every 10 minutes, another name is added to the list. An average of 18 people die each day waiting for organs.
This month, I’m gonna tell Pip’s story – a little bit every day. We need to improve these statistics. Learning more and talking more and sharing more is the first step.
Pip Goes Home:
So, on Saturday Pip was limp and lifeless and proven to have been having seizures and on Sunday he was a happy, smiling guy. Just like that.
He started eating again, he no longer needed the nasal canula that had replaced the vent to help him get enough oxygen. He spent one more night in the PICU to get completely switched from IVs to all oral medication because you can’t be transferred up to the floor with your IVs.
On Monday we were moved up to the 6th floor. The end of our stay was finally in sight. I had been told that as long as he remained stable, we’d be going home on Friday.
On Tuesday, in the late afternoon, the head of transplant examined him. She said “How would you feel about going home?
I said, “When?”
She said, “Today.”
I stared at her in disbelief.
She said “I know. We weren’t planning to release him today but then we thought about the fact that we’re not actually doing anything for him anymore and we’d hate for him to contract something in the hospital – it’s so full of germs. So, if you’re comfortable taking him, we’d like to send him home.”
Well, I wasn’t comfortable taking him home. He had a huge incision that was closed up with big metal staples and he was on 24 separate doses of meds that were dispensed in different combinations four times a day as well as the end of his methadone and ativan which were administered at intervals that didn’t match up with those other intervals. However, as uncomfortable as I was, she had totally jinxed us by mentioning that if he stayed he might catch something. Well, he certainly would now that she went and said it out loud. So I had to take the boy home.
I was terrified.
She said there was a good chance we’d be readmitted. She said about 50% of transplant kids are readmitted for one reason or another within the week following their release. But, she said, that means 50% aren’t!
I sat with one of his transplant nurse practitioners and went over meds and schedules and the foods he should never eat (really only grapefruit, I think) and the pets he could never own (amphibians, reptiles, and birds) and all the reasons to call the transplant team and all the reasons to rush him to the ER and all the phone numbers to keep on me etc. etc.
Of course, it’s not like they just send you home and hope he survives. The follow-up care schedule is pretty grueling in the beginning. We were back every couple days at first and then once a week and then once every two weeks and then once a month and then once every three months and then, just recently, once a year. The blood draws spread out the same way but will not become less frequent than once every three months until he stops growing. For the forseeable future, his blood is drawn every other Friday.
I cannot express to you what a miracle organ transplant is. If I’d had Pip in my early 20’s instead of my late 30’s and he had been diagnosed with Biliary Atresia, it would have been a death sentence. Pediatric liver transplant hasn’t been available all that long. And advances are being made all the time.
I have stopped asking them for a prognosis for Pip. I used to be obsessed with knowing what the future would hold for him and now I don’t ask. Because, the truth is, they have no idea. The first pediatric transplant recipients who have survived into adulthood are still relatively young so there isn’t sufficient data to be able to predict how long this liver will last him. I have been told there’s a good chance he’ll need another liver one day. They’re hoping he’ll be an adult by then. But the other thing they can’t predict is all the medical advances that are sure to happen. The liver regenerates. That’s why they can take a piece of liver from a living donor. It grows back in a matter of weeks. So scientists are working on how to grow you a liver using your own liver cells. I believe they’ll figure that one out in my lifetime.
We did not end up being readmitted within the next week after his release. We took him home and I charted medications and freaked out over every sniffle and stared at his eyes a lot to see if the yellow was coming back. But it never did.
After his transplant, his head started growing at three times the normal rate and it is now in the 50th percentile.
For his one year post-transplant anniversary, I made him a video and gave it to Children’s Memorial as a “thank you.” They put it on their website where it stayed for a number of years.
One day we were at clinic (that’s what it’s called when they see all the patients of a certain specialty all in one day – liver disease is Tuesday afternoons, liver transplant is Thursday mornings – so all the other patients in that section are also liver transplant patients) and a mom I had never met before said “Oh! That’s Jack!” (yeah – Pip’s real name is Jack) I said “Yes.” She said, “I watched his video over and over and over again when my son was diagnosed with Biliary Atresia. It gave us so much hope.”
He’s a miracle.
Here’s his video:
If you wanna go back to the beginning and read the whole story, click this here link.
To learn more about organ donation and to make sure you’re on the registry for your state, visit www.donatelife.net
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