September 15: Day +75

Heaveno!

T'was the night before trach...

and all through the house

you could hear the teeth grinding

inside of my mouth

I think I need a mouth guard to help my jaw; it aches pretty much around the clock from clenching it 24/7... and tonight it is howling. I was embracing the trach earlier today, but now on the eve of its installation, we just did 3 successful pressure support trials. She's doing so well on the vent, but her blood pressure continues to require more and more vasopressors. It is such a conundrum. I hope I can sleep tonight.

I have to be in by 7 to prep for surgery. It's gonna be a busy time down in the O.R. I met with Dr. Rimmel today and he basically told me he needs me in there from beginning to end, minus the part where he's cutting a hole in my kid's throat. He confided that he'd freak out if he was in the room and it was being done to his kid. So as not to have him worry about me, I told him I would step out for that part (you can't see anything anyway, and it's far from my first surgery with Bella, and frankly, I can't imagine it comparing to the intensity of her birth,but whatever). Then, as soon as he's done, I'll come back in to set the bandages and dress the new wound.

Then the really fun part begins. We have to figure out how to leave her be for up to 7 days straight while the track for the trach heals. No one really knows how we're going to pull this off. Everyone admits that we don't know how we're going to do any of this until we actually get into the OR and onto the table.

Solid.

Good thing I'm used to improvising with Bella.

In addition, we can't get Bella to relax her fingers anymore. They are permanently clenched. It's not that they are stuck; she is actively clenching them all. the. time. We have been splinting both wrists, right elbow, and wrapping grips inside her palms to help keep her in as neutral alignment as possible. Today, we tried one more technique to get those fingers straight. We are going to add one layer of cotton balls stretched out between the existing palm roll and her finger tips per day until we have slowly straightened the whole right hand out. We straightened them all the way and tried splinting her for 20 minutes twice today, but it was too much pressure on her fingers, so we're going to go really slow. Shock.

I'm sure inside this splint Bella is giving me the finger...

On top of all this, something is brewing in Bella's liver, and again, it has the docs completely baffled. There is some sort of clot, but all her labs are completely normal and she presents with absolutely no symptoms. They did a liver ultrasound on Monday just to take a peek since it had been a few weeks to see if the VOD was behaving. Well, they found an area of the liver that wasn't getting any blood flow. No one told me till yesterday. So, they ordered another ultrasound today because the head doc simply couldn't believe the results of the images and figured they were obscured or false. Well, they did it again today and saw the exact same thing; no blood flow in one portion of the liver. Weird. They aren't going to do anything about it since it's not technically messing with any part of Bella, but as soon as the trach heals, they want an MRI to see what exactly is going on down there.

Still, I don't have the sense at all that Bella is at risk. I feel like she is really pissed off at all of us for getting her so far behind the 8 ball with the amount of meds she's been on for so long. Now she is so weak from atrophy and edema that she is at risk, but I can just feel her fire under it all. It's like we've got her tied down, or weighed down with wet blankets, trying to contain her. I don't know. That girl is a PISTOL and always has been. That hasn't changed. And that is a GOOD THING.

So, it's scary, no doubt, but I know she's counting on us to guide her through this safely, so come tomorrow morning, I'll be up and ready to meet it all head on. She's depending on me to watch out for her each time she heads into the O.R. so, what else can I do?

See you all on the other side.

God night.

P.S. One day, Bella will look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."