We are somewhat disheartened tonight after Kyrie’s post-Cincinnati follow-up this afternoon.
She’s lost weight since being off oxygen when awake, has been super fussy but isn’t sick, and is sleeping all day and night again.
This is the third or fourth time we have tried to wean her off oxygen and this happened.
She is back on air full time, while we still don’t know what happens next. She was only blue once in the last week, which is progress, but she’s maintaining her sats at the expense of her weight, energy/activity, and alertness.
It’s like swimming in circles with this one, no one wanting to trach her because she’s better than some babies like her (not dead yet) and so much better than she has ever been, but everyone agreeing she still can’t breathe.
Except she can, so much better than before!
The distraction last summer was successful, mind you, and saved her life. I know it did. I know not all doctors do them, and not all parents want it, and I hope it is many, many years before she has to have another one, but the one last summer saved her life. I know it, and I will always say that. The team last summer saved her life, and now she is worlds better than she was, and we are so grateful.
Besides that, compared to when she was born, her airway is gorgeous, and we are so glad she can breathe at all, so it’s hard to complain about a baseline that’s better than where we were.
But that’s not the same as having enough air.
And we don’t think she would need a gtube if she could breathe.
All this means we are back to the place of waiting for her to get sicker before anyone will help, while hoping she will get better in her own time while we wait, and all that while being so glad she is looking so perfect otherwise.
That’s why they think we are crazy, I think, because it doesn’t make any sense.
If she can do it, obviously getting better through this without a trach is better, but we don’t know why everyone keeps talking about it but no one doing it, and we worry about her brain and weight and heart because of it.
On the other hand, if all she needs is to be plugged in to a 75 foot cord while she runs around the house, and church, and the backyard, and anywhere else we go, then that’s not so bad, really, when you consider the option of not breathing.
In the meantime, we are grateful for those doctors who do listen to us, and do care for her, and do take good care of her, and for nurses who advocate for her and love her so well despite the paperwork she gives them.