It was really exciting for everybody
All my kids were off to school. I think I had just gotten back from an errand, and I sat down and I was about to eat my lunch, and she just called me and said, “We have lungs. You need to get down here!” And I’m freaking out, like, “Oh my God!” I was happy, I was excited, I was sad, I was scared, I was crying…at the same time! It was overwhelming.

Mother of Austin, 9


RJ had a chance
We got a phone call saying that they had lungs that they thought were a very good match for RJ, and that we should head to the hospital. My very first thought and reaction was “Oh my God, someone has lost a child,” because I know that’s where that comes from. And I was very sad for that mother. But then sort of scared and relieved that RJ now had a chance.

It was about 10 o’clock at night, so I was actually half asleep when the call came, and I looked and I saw the number and I thought, “Oh my God!” at first, because it was our doctor, and I imagined he would only call for something like that, because we were all hypervigilant at this point. And I just went and I told RJ. He was still awake, and I said, “You know, RJ, they have lungs for you. We have to go to the hospital.” And he was like, “Oh really?” First he was like a little excited, then he got scared, and he’s like, “That means this big surgery…” And I said, “Yeah, that’s what that means.”

Mother of RJ, 12


Another long wait
We went to the hospital at midnight. We were there all the rest of the night, and he didn’t actually go into the OR until about 3 o’clock the following afternoon. A long anxiety-filled amount of hours!

We were just trying to be calm and just be supportive to him, because at this point he couldn’t eat, he was irritable…it was hard. Just worrying about, you know, whether or not something was going to go wrong, were we going to be sent back home? It’s a long, long ten hours.

[Later] The actual surgery took about 13 hours. Another long wait! Those days were just filled with just sitting and waiting and praying and wondering.
The nurses were very good. They called during the operation and told me when he was on the bypass machine, told me when he was off, told me when the lungs were in. And then the doctor came up at about ten and a half hours, he came up and said it’s all done now, they were just finishing him up. And then I waited, like, two more hours before I was able to see him very briefly in the ICU…It was the scariest thing I’ve ever seen in all my life! He was covered in tubes, and he had a little bleeding problem on one side, and there was blood everywhere, in every tube. They were putting blood in and it was coming out…I think the nurses said, “You can come and give him a little kiss really quick, but then you have to leave because we have to get him stable.” So that was the hardest part, to just see him, so quickly, looking so terrible, and then to have to leave him, because they needed to work on him.

Mother of RJ, 12


Everything happened fast for her
She was on ECMO for 16 days, and at that point they had started Flolan, which is a medication to lower the pulmonary artery pressures. We were told that staying on ECMO too long was very dangerous, and now that they had started the Flolan medication they felt that perhaps she could come off of ECMO and wait for transplant at Children’s on the medication under supervision. But the day that we signed the consent form for them to place the permanent Flolan device into the heart, lungs became available. So it was kind of miraculous!

The anesthesiologist was in at the ECMO site, and we thought they were getting ready to take her to place the catheter in her heart for the medication, and he said, “No, lungs became available.” So it was kind of shocking news, but you know, everything happened fast for her, and so did the lungs!

Mother of Laura, 14


Second time around
I think it was probably a little scarier, because we were a little wiser [after the first lung transplant]: ignorance is kind of bliss the first time around! But second time around, we had been through it before. We didn’t really know how she would come out of surgery; we knew the challenges that we faced the first time and how we dealt with them, but she was older and she was sicker, so it was kind of nerve-racking.

Mother of Laura, 14