Scroll for full transcript

Kiana: Devin can breathe better now. He looks more comfortable since he got the trach and vent. Before, I felt so bad watching him struggle to breathe and not having enough energy to do anything but sit there in his chair. Don’t get me wrong, it’s not perfect now but it’s so much better.

I thought the trach might be dirty, but it’s really not at all. And I was nervous about Devin being hooked up to the ventilator all the time because it’s not good for children to live like that but actually it’s not that much different than before. That’s the thing they didn’t really tell me… sure, he might be attached to equipment all the time but we still do stuff, you know?

And, he already had the feeding tube so it’s not that different… actually, I don’t even think Devin notices the trach too much. He can still make his noises to communicate things, just like before the trach. He has a stuffed bear that has the same mic-key button, the same gtube, and the same trach that he has. Sometimes it seems like Devin touches my neck wondering where my trach is. It’s just his normal.

The trach doesn’t seem to hurt him or anything. I know he felt scared before when he couldn’t breathe so good but now, with the trach and the vent he gets the air that he needs.

Scroll for full transcript

Mary: Being sick all the time has been hard on Chayton. He can get angry sometimes. He doesn’t like the nebulizer or the cough assist machine. And he hated the BiPAP at first. The doctor said Chayton could be off it for a few hours each day and just be on oxygen, but afterwards Chayton wouldn’t want to put the BiPAP back on. Sometimes I felt we were torturing him.

They had trouble at school too, he would fight the nurse about his breathing treatments. But slowly it seemed to get better. After a year or so he seemed to accept it all more—maybe because he is getting weaker, and he knows he actually feels better when he is on the BiPAP.

He was back in the ICU again on his last birthday, which was hard. But the nurses gave him a big party. There were balloons and a clown and presents. He was so happy! Since then, I think he hopes there will be a party every time he goes to clinic.

There was this older boy on BiPAP in the ICU: Joey. I forget what was wrong with Joey. But Chayton looked up to him and watched Joey do his treatments and use the BiPAP machine, and it all changed. He was less frustrated. We can still keep him off BiPAP for an hour in the morning and after dinner. But now he asks for it.

No child should have to do all this. I don’t know how he does it. But I am still glad we did not do the trach. I do not think Chayton could have handled that and I know that I couldn’t do it.