She thought she would be instantly better
We had made promises that in hindsight we shouldn’t have: because she never had had caffeine, she was like, “I’m having a Coca-Cola in the recovery room!” We’re like, “Oh, absolutely!” So when she was still intubated, she was mad at me that I wasn’t giving her a Coca-Cola. The doctor’s going, “Just wait, like, three days!” “You promised!”
She definitely had in her mind, like, she was going to be instantly better, so she was really mad at us afterwards. “You said I was going to…” I’m like, “It’s going to get better every day,” and it did. And then she was all right. But it was really, really tough.
Mother of Eva, 13
I ended up making her afraid
The breathing tube came out right away. That was my biggest fear, the whole breathing tube thing, and it was awful: I ended up making her afraid of it, and I should have shut my mouth because that was me, not her, you know? She did perfectly fine, awake with the thing in her mouth, and me, I’m like [gasping]. She did really good.
Mother of Alanna, 15
In the ICU
When he came out he went into the ICU and he was just kind of tired. He was still hooked up to all these machines and he was taped up and he didn’t look like Austin. He couldn’t really tell what was going on, was kind of groggy and stuff. After a while, maybe a day or two, they started to take things off of him, so he was able to smile and stuff like that, but he couldn’t really talk. It was like going through that whole thing when he was an infant all over again – he wasn’t able to do a whole lot.
It was hard sitting there watching him hooked up to all of these machines again, where he couldn’t really move or couldn’t talk or couldn’t tell you what was going on…we just tried to keep him as comfortable as we could, and then he ended up going upstairs. He ended up getting sick again and going back to the ICU, but he recovered quickly and he was out of here within three weeks.
Mother of Austin, 9
He seemed afraid to just breathe on his own
I was allowed to stand there and see him extubated, which was just way too much medical stuff for me to see! But I wanted to be there. And that was scary, because I was worried about, you know, all the worries: “How was he going to breathe? Was he going to be able to breathe? Are the new lungs going to work? What’s going to happen?”
They woke him up, and he had to be put on a CPAP mask because he had some trouble breathing – so then I was again more worried, because I was like, “Oh my God, what does that mean? I didn’t expect this piece.” But it did happen. And we had, like, ten days of just constant worry about, “Okay, what does this mean, what does this mean, what does this mean?”
They would do intermittent periods where they would put him on oxygen, but he seemed afraid to just breathe on his own, because he had been dependent on the machine so much. It took a lot of coaxing – he would begin gasping for air and wanting the CPAP mask back on, and I was like, “No, you don’t need that, you’re breathing fine. You’re completely fine.” It took a lot of encouraging him and supporting him so that he could feel okay. And then the CPAP went away and he was on oxygen alone, and then within a day or two that went away as well.
He came home very quickly. He had his transplant on the 10th and he came home, like, within six weeks. Once the oxygen went away, it was just a very speedy recovery.
Mother of RJ, 12
A lot of retraining
The surgery went very well. In fact, she had several complications, more so because of ECMO than the actual surgery, because she had been immobilized for so many days. She woke up and it was kind of like having a baby again: she couldn’t support her head, she couldn’t stand on her own two feet – at four years old she had just kind of gotten over the whole potty-training thing, and then she couldn’t get up out of bed to use the bathroom and that bothered her…so it was kind of a lot of retraining. She also had some vocal cord damage from the breathing tube that was in for so long. She talked in a very soft whisper after surgery so we had to kind of re-teach her how to talk.
Mother of Laura, 14
Just being herself
She was so young, but I honestly think that that is where the resilience comes from, because, you know, she wanted to do all of the things that she had done before! We tried very hard to make it fun – a lot of her PT was-bike riding because she loved to ride her bike. So it was constantly a game. We tried to make it so that she didn’t even realize she was doing the physical therapy to get better. She just thought of it as being herself!
Mother of Laura, 14
You slept through the best parts!
It was awful. She was hooked up to so many IVs and on vent…I mean, they tell you everything, what to expect, this is what you‘re going to see. But when you walk into the room and it’s your child, it’s like the air gets sucked right out of you. And I literally backed out of the room and I had to breathe for a minute before I could go back in. Because it was just, it was awful. We jokingly tell her, “You slept through the best parts!”
Mother of Jess, 18
One thing after another
He was transplanted on Wednesday, and then on Saturday they did a routine ultrasound in the NICU, and we found out that he had hepatic artery thrombosis [a clot in the hepatic artery]. So he had to go back into emergency surgery for a revision, and that was very scary for us. It was another eight-hour surgery. We didn’t know what to expect. And the recovery from that was very hard on him; he had a lot of trouble with pain management after that. He couldn’t settle; he was awake for literally, like, eight days – we couldn’t get him to sleep! He would just cry and thrash on the bed, and we just couldn’t figure out what was wrong with him, we tried everything! It was just very tiring to have to be awake and go through all that, not knowing how he was going to be and not realizing that this could be a complication…obviously they tell you all the risks, but you always hope for the best, and you don’t realize it’s really going to happen! It was very hard because it was like one thing after another after another.
Mother of Noah, 5
He recovered pretty quickly
We got out of here in nine days! And it was a lot to do with the walking, if there was any one thing. My wife didn’t necessarily agree with me, but I would push him to get up and walk because our bodies heal better when they’re moving. And it prevents infection and fluids, everything. I really was pretty impressed that he would get up and walk: he used to walk a lot, and he recovered pretty quickly.
Father of Walter, 11
The first year
Prepare your child that she’s not going to feel like getting up and running around the block the minute she wakes up from the transplant surgery. It is surgery and you’re going to feel really crumby, initially. You always need to do exactly what the doctors and nurses tell you to do; that the more resistance you put up, the hard it is for yourself and for them. You need to make sure you prepare your child for the fact that, even when they are feeling crumby, they do need to be kind and respectful to the people who are caring for them always because that kindness will come back to them in return. Every day it gets better and every day is an improvement for everybody all the way around. Also, know that when you’re going through that first year post-transplant, some children have absolutely no hitches and some children have a bumpy road. Be ready for either; don’t be shocked, don’t be terrified, and just maintain, because the first year is always the worst.
Anonymous
Donor’s Guilt
When he lost his transplant it was disappointing— very disappointing. I had a lot of guilt, thinking that my kidney wasn’t good enough, because it was my kidney that went into him. We were very concerned and didn’t know what was going to happen. He lost it so fast; it was scary. We thought that [the second transplant] would go into rejection right away, since the kidney was coming from someone we didn’t know, and we didn’t know how their body function was or their history. It was scarier this time than the first time.
After the transplant, he was fine for two days, and then he ended up getting septic near his peritoneal hole, so that was very scary. He was in intensive care for a couple of days and had to have antibiotics. He had to have dialysis to get his kidney moving along, and while he was on dialysis he had a stroke. We never knew that this would happen; that was the scariest part of this whole last episode with his disease and rejection. But he pulled through it 100%, and since then he has had no problems.
Anonymous
We just had to wait and see
Mom: [After transplant] We had the kidney issues to deal with some, and her lungs were sick too. We were probably in the ICU two to three weeks, had gone up to the floor and had started talking about discharge, and then she got really sick again. They thought it was a lung infection, but they couldn’t find a source of infection, an actual organism that was infecting her. She ended up on the high-tech ventilator, the oscillator, for two weeks at that point and they were kind of like, “We don’t know.” They were treating her with a bunch of different antibiotics and stuff, but didn’t know what was going to help, if anything was going to help, and we just had to wait to see if she was going to get better. And then again it was like, “Man, we thought we were through the worst, and now she’s so sick we don’t know if she’s going to make it again,” – not because of the transplant, but because she got sick and is immunosuppressed now.
Dad: Your mindset changes after transplant though. Now you do everything that you can do. She has this transplant, she has hope to live, so now you do put her on the vent, you do whatever you can do to keep her going, because she has a good chance to live.
Parents of Sophia, 4
It was really dramatic
There are other people who’ve had multivisceral transplant, but they didn’t have mitochondrial disease or even a metabolic disease. So I think there were a lot of features to her transplant that went very smoothly, but I think the metabolic piece was really complicated. She had symptoms that they hadn’t seen before. So I think that was probably the hardest part, but in terms of incisions healing and pain being managed after surgery, she was completely off TPN within 3 weeks, which was their goal, so it worked. At first she just was on formula, but we used to think that just putting 30 cc’s into her belly was huge: I mean, her stomach and intestines both had tubes that were just draining all of the time into a bag because she would vomit. So to watch 100 cc’s or 500 cc’s go into her stomach was just unbelievable. It was really dramatic, it was huge.
Mother of Meg, 9