From the best we can tell, our early intervention team (speech path, occupational therapy, physical therapy, developmental therapy, etc.) or someone from that team called our pulmonologist today to tell them how sick the baby (toddler!) has been, and how this is different than in the past.
She has always had sudden and seemingly random severe desats, but now we are getting blue lips and fainting spells and whatever happened two weeks ago when she quit eating for the whole four days and I had to put the ng tube back in.
Then finally, our ENT in Utah and the pulmonologist consulted, and they decided she needs a trach immediately.
The Pulmonogist called us and told us all this, and that we need to have her in Tulsa with her hospital bags packed by 230 this afternoon.
We dropped the kids off at Nathan’s parents, ensuring they were calm for the extra time with Grandma and Grandad.
They are angels. Just busy Angels!
We got to the doctor’s office on time, and waited while he went through results.
He told us again that it was time to trach her, because babies aren’t supposed to be passing out or turning blue or not growing. Most parents, he said, don’t have to resuscitate the babies a couple times a week. Most new toddlers don’t sleep 22 hours a day.
She told him what for, naturally chatting it up while she had the chance.
Then he got her latest sleep study results, which are actually better, because PRS children have all kinds of variations in sleep studies, and said because it is better then she doesn’t need a trach after all.
But, he said, we still need to find the cause and get results so we can fix the problem.
Because she is a sick baby, he said.
And she climbed a chair, stood up, and shouted, “Kee-yay no baby!”
I about fell to the floor laughing so hard!
So that’s how she got admitted, but not for a trach, or maybe, we don’t know.
Then blood work.
Then an IV, because the only thing better than a baby with no airway who likes to try dying often is a baby with no airway (for intubation) and no IV access. So we got IVs just for the fun of it, and I covered them with a leg warmer so she won’t mess with it.
Then we got big girl food ordered for the first time, and they brought her a tray of chicken and green beans, which she ate Korean style like Papa.
Next was the dreaded sleep study wires, except this time it is for a long EEG (?), to check her brain for seizures and the area where her stroke was – the medulla something, which is the part of your brain that tells you to breathe. They want the be sure this isn’t the cause, because if that is what is wrong, a trach won’t help that.
Then her old caseworker came by to visit, because we love her and she loves that baby, and then she had breathing treatments, and the put on oxygen for the night, and finally we could give her milk and sing our rocking song and put her down for the night.
I put blankets over the monitors and computer screens, and pulled the curtain closed to block hallway light when nurses come in at night. Maybe now she can get some sleep.
Or if they will find new things, or more secondary to airway things, or nothing.
We just want her to breathe.
Breathe, and maybe be pink instead of pale or blue, if that’s not too much to ask.
We trust Heavenly Father’s plan for her, but pray for clarity and revelation so that good decisions will be made for her, and Nathan gives her blessings to help her be strong and keep trying.
We also ask for prayers for Nathan’s parents, who have all five of the other kids right now! Rumor has it that pancakes have already entered the picture! So funny!