Cutting back
Her heart function had decreased. She was more tired, and we saw that over the next two years, like, cutting back. So she gave up playing drums, and she stopped golfing and biking, and towards the end there, she couldn’t even walk around the mall.
It was really sad and scary – you know, you just see a little bit taken away, sort of month by month. And I’m projecting, saying I know because of her blood type that we’re looking at a year’s wait once she gets on the list, and we’re already here.
Mother of Eva, 13
After the stroke
There ended up being a complication from an earlier cardiac surgery. Alanna had a stroke, and we ended up back in hospital and we didn’t leave after that. I wouldn’t go home, I couldn’t do it anymore! … Her not being able to talk drove me absolutely crazy, because I can’t imagine in your head knowing what to say and not being able to say it. Even writing she had a hard time, because she did lose some feeling in one side too. But me and my husband went out for a little breath when my mother was staying with her in the hospital room, and right when we came back, she just looked at both of us and said, “Hi!” I cried because I couldn’t believe it. That was very lucky.
Mother of Alanna, 15
He’s just not thriving
He was going to the hospital, like, every three months, and then it would slowly go into each other, like every two months, every month, every couple of weeks… The second time Austin was admitted for treatment for one of his colds, the doctor said, “Something is wrong. He shouldn’t have been admitted this soon after his last. I’m going to look into it.” And he did a bronchoscopy where he went in and took pictures and took samples of everything that was going on with his lungs. And he said his lungs were really bad, that Austin wasn’t breathing out of them very well, and that he should get a transplant because he’s just not thriving.
Mother of Austin, 9
Fundoplication surgery
It was probably one of the hardest surgeries she’s been through. I think that just she was feeling so miserable and there was so much pressure on her to eat and to stay strong so that they could relist her for transplant, it really did take a toll on Laura and all of us…They ended up putting in another stomach tube, so we supported her with tube feeds through the night – which was a challenge, because having not really lived through a decline in her ability to breath before her first transplant, I never realized how much breathing and eating go hand in hand. When she was struggling breathing, she just didn’t want to eat anything, and everything seemed to upset her stomach and then she would feel sick, so it was a challenging time. She would say, “Oh, I feel like scrambled eggs today,” and so of course you’d make scrambled eggs, and by the time you gave them to her, she wouldn’t eat them. It was tough.
Mother of Laura, 14