It’s a marathon
It sucks, just to put it bluntly. It really does. It’s hard. You know, when you go through transplant, you want things to go perfectly, and they did for six weeks. He’s our only child, he’s been through so much, and you want to take that away…but as a parent you can’t, he’s got to go through it. And it’s a journey! Going through transplant is not a cure, it’s just a procedure. It’s like taking high blood pressure medication. We’re just constantly trying to get this liver to work properly, his body to work properly with it, and we take a lot of blood work and it’s one day at a time…it’s a marathon, it’s not a quick race.
Probably the psychological components are the hardest, away from the medical procedures which are very scientific: it’s the ups and downs of 24/7, it’s the pain, the agony, the disappointment, the sleepless nights…it’s really, really hard. But fortunately for my wife and I, we only have one kid, we have flexible schedules, here in Boston we’re in one of the best places ever – you know, it could be a lot worse. You have to keep things in perspective. And we have a wonderful team, they’re working hard to correct it.

Father of Walter, 11

 
You can never let your guard down
He’s probably been inpatient every year since he’s been transplanted, for various things. He picks up a virus that causes him high fever, has to come in and get screened – or an infection, he’s had stomach infections before – and he actually had another surgery revision a few months after his first one. Last year he was inpatient – he was here for eight weeks and he actually had to have splenectomy. He developed ITP and got very sick.
So that’s the thing about transplant – you kind of hope, “All right, I paid my dues, I went through it, and he’s been through it. Let’s just go, let’s just be normal.” But you can never let your guard down with a transplant child, because you never know.

Mother of Noah, 5

 

She kept us going
Because of the clot in her artery, she developed a stricture in her bile duct. We were at Children’s numerous times, and they were continuously putting stents in her bile duct to try to widen that so her bile would flow on its own. I would say we went through at least a year of that. And in fact, we were just saying, her stent was removed last June, so it’s been over a year that her stent has been out and she’s (knock on wood) perfectly fine.
The biggest thing was it was just frustrating – going back to Boston again? But Hannah really kept us going, because for Hannah, it was like her play area. She walked in this hospital and her face lit up, and she knew she would get a balloon, she knew she was going to play in the play room…she loved her nurses on the transplant floor, absolutely formed such a great bond with quite a few of them. So we kind of lived through her, because she was not nervous, she wasn’t scared, and she kept us going.

Mother of Hannah, 4

 

A very rude awakening
He had one other really serious setback, but in the last three years he’s been doing very well.

We thought he was really sick with a virus, first time he’d ever been sick with a virus… as it turned out, he became sicker and sicker, and I finally brought him into the emergency room the day after Christmas, and we found out that he was septic with three different kinds of bacteria. Very, very sick. So even just that condition itself was life-threatening, he ended up in ICU, but what we found that when we tried to figure out what the cause had been was that some point months prior his hepatic artery had ceased to work, and a portion of his liver had died and had become an encapsulated abscess. And what was causing his septic condition at the time was just that abscess every once in a while was leaking out. So they had to drain the abscess and leave a drain in for a little while. They had him on IV antibiotics for quite a bit, and I think he even came home on IV antibiotics. Got it all sorted out, and we kept looking at his liver numbers to make sure he was okay, and what we found out was that he has collateral blood supply that is feeding his liver right now and keeping him healthy, and it has continued to do so.

I think probably the impact at that point was worse than it had been with previous setbacks, because we were so far out of having had any trouble that I think we had started to feel very confident in our ability to just live normally. So it was a very rude awakening, and it was also scary because he’d such a hard time with the third liver transplant, that as I saw us kind of contemplating the fact that this liver might fail, I wondered if they would even transplant him a fourth time. But the team did address my questions right away and let me know that they would consider retransplant if that was necessary and that they were as always going to do everything they could to make him better. So we worked on it, but it was very, very scary.

Mother of David, 15

 

Miserable
The hardest part was that he was so unbelievably miserable. He was in so much pain, he was so scared, and there wasn’t a thing that anybody could do for him to make him better. I remember looking at him and thinking, “How long can he stand this? How long can he live through this?” There was one night when he told me that he couldn’t take it anymore, and I knew that he was talking about the fact that he just couldn’t live like this anymore. And I told him, “You know what, honey, I need you to hold on just a little bit longer. I need you to be strong for me just a little longer. Let’s make it through tonight and talk to the doctors in the morning and see if they can help you.” That night…about two hours later he looked at his nurse and he said, “I’m gonna die.” And she knew that he was serious, so she pulled the doctors aside the next day and told them that he had some pain issues that they just had to figure out. Because at that moment he was not so much in physical danger of dying— not as much as he had been a few days before and was about to be a few days later, but at that moment he was ready to let go. If he’d had the ability to do that and hadn’t felt like people really needed him to stay, I know in my heart that he would have just let go and would have gone to the Lord, because it just wasn’t worth it anymore. That was the hardest time we’ve ever had.

Anonymous