August 23: Day +52

Who is that? It's Bella!

Up days and down days...

... today was not exactly up. Sorry. Bella rarely seems to give us two in a row of anything, and if that is the case, tomorrow should be great! [tired smile, followed by a sigh]

Bella was a little restless last night and needed a few bumps of sedation throughout the night. That was a bad omen for the day, because usually she sleeps pretty peacefully through the night. If she was up, it meant she'd most likely be pooped today, and boy was THAT the truth. She tanked today in just about every way possible.

Her blood pressure was through the floor at several stages today, this evening, and tonight. And when I say, "through the floor," I mean like 60 over 21. At first, I thought that since we've D/C'd norepi and weaned back on hydrocortisone, we'd have to play around with the vasopressin before we found a happy medium. The problem is that we were dealing with low blood pressures before we went on esmolol. Now, her blood pressure has an antagonist on the inside (probably CIRCI - Critical Illness Related Corticosteroid Insufficiency), as well as one on the outside (esmolol).

So, first, we cranked up the vasopressin to try to even things out. Nope. We rolled Prisma back to net zero to help. Nope. We gave her a saline bolus to increase her total fluid volume. No dice. Finally, after ordering an EKG, they infused blood, and ONLY THEN did her blood pressure respond at all. Hopefully, it will stay up through the night.

Daddy changing out head dressings with respiratory therapy...

We are still taking it one day at a time around here. There really is no "plan" past trying to get her back to a fluid-even weight and keep her stable. On top of everything else, her blood gases went really acidotic (acidic to you or me) today so we had to crack the vent back up a ways as well.

Again, I think the heart of the matter right now is that we have 2 main issues one of which is causing a third:

1) CIRCI (adrenal insufficiency). Evidenced by low blood pressure despite IV fluid and vasopressors. Main treatment? Hydrocortisone.

2) LV Hypertrophy (thickening of the heart wall in the left ventricle). Causes poor blood pressure due to inability to fully pump blood into the circulatory system. One main cause? Hydrocortisone.

3) Acidosis of blood pH. Unclear as to origin. Haven't gotten any good answers, but also I haven't asked the right questions... I'm usually asking about BP and drug/fluid interaction.

Oh yeah... and then there's...

4) Renal Failure

Bella checking daddy out during bath time...

So, ups and downs. I feel afloat drifting in 40 foot waves in a giant storm with nothing but a life preserver on. My life preserver is my faith. It is rain-soaked, waterlogged, fraying at the edges, and just plain worn down. It's the only thing that keeps me from sinking permanently into despair. There are days when I am happy, days when I am angry, and days when I am fearful. Today, I am fearful. Dr. Verneris, many many weeks ago, cautioned that one thing you don't want is to be parked in the ICU. Well, it's happened. We're parked with no view of 5D in sight. I have faith that the view will change. I can't even feel it right now. Right now, the fear's grip is just too tight. Nevertheless, it's all I've got to get up tomorrow and do it all over again. I'm holding on to my life preserver as I fall asleep tonight.

Dear God, you can read the homing beacon in my life jacket, but don't come and get me. Get Bella instead. Heal her kidneys. Heal her heart. Heal her adrenal glands. You have already healed her liver. You have already healed her skin. You have given us so many tools to work with. Thank you for all of this, and for the practitioners who wield them for Bella's aid. Please, God. We grow weary, and need to lean on you now more than ever. Please "solve the case," so that victory may be proclaimed and your power and love may be witnessed by those following Bella all over the world.

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."

Good night.