August 30: Day +59

The three loves of my life...

Oh Bella... you're such a mystery.

Last night, we went to bed with a night time call-in report to hear that her pressures were "superb." Awesome! We went to sleep content. Once again, we thought we had the puzzle at least solved for the moment. Bella was hopped up on all-you-can-eat portions of steroids and vasoconstrictors. Pressures would surely hold now, and we could get back to getting all that extra fluid off...

I walked in this morning and looked at the monitor, and just like Groundhog Day, her pressures were down in the toilet... again. Chris, one of Bella's primary day nurses, just looked at me totally crushed. My heart started pacing. How could this BE? Bella was on double the highest dose of norepi she'd ever been on, and almost 3 times as much steroids. After less than one day, Bella just couldn't hold her blood pressure, despite the megadoses.

I stood in rounds with my shoulders slumped. I felt like the spine had been pulled out of me. What was left? When you have low blood pressure (hypotension), it's either the pump (the heart) or the tubes (vessels). You can give fluid to fill the pump, or squeeze the tubes to act a little smaller and hope that either or the combo will increase the internal pressure within the system. The problem is that Bella seems to have leaky tubes, so no matter how how much fluid you pump in or how hard you squeeze, the fluid leaks out, and the pressure drops.

I thought we'd played all our hands. We gave fluid, we gave steroids, we gave pressers. Nothing is holding. I asked the new attending doc today if there was a drug to fix capillary leak, and he told me that if he knew how to do that, he'd be a very rich man.

I told him someone needs to make "fix-a-flat" for capillaries.

Now THAT is a million dollar idea!

Anyhow, we ordered yet another echocardiogram, and the dynamic outflow obstruction has returned. We're hoping it's from the whopping dose of norepi, and we are replacing the norepi with yet another pressor called phenylephrine, which structurally looks like norepi, but behaves like vasopressin. What that means is that it shouldn't get dialyzed by Prisma, and it won't squeeze the heart... just the vessels. We are in the process of switching over right now. It should take about 24-48 hours. The hope is that it will relieve the heart from pumping so hard, which in turn will lower the outflow obstruction. Who knows.

There are two other theories / plays on the table, but I'm too tired to get in to them any further right now. If they keep getting talked about, I'll bring them in to the conversation. Otherwise, I won't worry you. Just pray the phenylephrine for some reason does the trick for us. We really need a miracle. It would be the best birthday present I could get tomorrow just to walk in in the morning and see strong pressures. That's all I'd need (aside from the chocolate cake I really really hope Ali and mommy are making for me... :P)

We will probably revisit the A line tomorrow again as we couldn't get good readings all day and night today despite moving her cuff from both arms to right leg over and over again.

We also had Bella's day +60 biopsies and blister tests done today.

Dr. Tolar lining up their blister machine.

Need sleep. Mentally wiped from the day.

P.S. Found out Ali is a carrier for EB today as well.

Not a banner day.

Bella's fabulous socks of the day...

Ali pinching Bella's tootsies...