Mama! I am in my seat!
Mama! I am in my backwards seat!
Mama! I am in my backwards seat in the backseat!
Backwards backseat is so funny, Mama!
~ Kyrie, age 19 months exactly
It is Dr. Paul Digoy, recommended to us by our pediatrician and many airway moms.
My heart is praying, and my fingers are crossed.
I don’t need a miracle worker.
I need someone who will listen.
I don’t need one more specialist.
I need the right specialist.
I don’t need someone else only looking at a piece of her, but one who will talk with me and her pediatrician and let us all be on the same page.
It isn’t just one last try.
It’s her life.
It’s her quality of life.
It’s mine, too. I would do anything for this baby girl. I would. I have tried hard. But I am tired. I am wearing out like she is.
We don’t need eight hundred specialists all telling us differently and arguing over philosophies of treatment, just the one who will commit to her.
They don’t have to do everything. We have a really good pediatrician and nurse team, and they know our girl and see her as a whole picture and take good care of her.
We have home health and nurses at home and school.
He doesn’t have to do it alone.
But she can’t do it alone.
We need an ENT instead of Pulm, and we need the hospital he has privileges at instead of this one that doesn’t know what to do with her and thinks we are crazy.
That’s not too much to ask, right?
I mean, if she can endure 19 months without it a trach and not complain about the braces that put on her feet instead, we can do this, yeah?
If she can have a tongue grafted in and sewn to her lip for her first year of life, this is nothing, right?
If she can learn by one month how to cross her legs to protect her blood flow to the heart, and by three months how to move her head so the drool that drowns her falls out of her mouth instead of down her throat, and by six months how to reposition herself when her funky shaped and too big epiglottis flops around in the wrong place, and by nine months how to lay down and rest in the middle of playtime because she doesn’t have enough air, and by a year and a half how to suck the flavor out of food she doesn’t think is safe to swallow and then spit it back out on her plate…. if she can do all that on her own, then what’s a quick drive to OKC for the ENT, right?
Nothing. It’s nothing.
But it’s everything.
It’s losing your job because you are trying to keep her alive.
It’s protecting her life because a very nice doctor who is the wrong kind won’t be a helpful doctor.
It’s empowering both a pediatrician and a parent to get her real help because the right person is on board.
It’s the difference between hope and despair.
It’s a big ride we take today, the trip back to OKC where she was first life flighted when she was born.
Full circle, as they say.
Ready, Mama? Ready, Mama!
We always say goodbye on procedure days, just in case.
We know about cats having nine lives, but we’ve lost count for this little kitten.
Many thanks for your prayers today.
We need them.