August 20: Day +49

TGIF.

My brain is full. In another browser, I currently have 4 different tabs on wikipedia open:

Dynamic Outflow Obstruction

Cortisol

Blood Pressure

Adrenal Insufficiency

I've been spending the week trying to wrap my brain around cardiology and how Bella's situation defies all convention. Bella has left ventricle hypertrophy resulting in low blood pressure. Problem is LVH is usually a result of HIGH blood pressure. Today, we went on a drug that is usually given to lower blood pressure. Then, we added another medication that raises blood pressure. This is on top of the two other drugs we are currently on to raise blood pressure.

Sound a little confounding? Now you get a glimpse into why I have a chronic headache. If you ever want to go insane, try to understand an insane person's logic. I feel a little insane trying to understand today's call. The med we gave (esmolol - a beta blocker) was given with the intention of lowering Bella's heart rate down to around 85 bpm. Her resting HR is around 110-115. The thinking was that if they could slow down the heart rate, they would allow the heart to fully close and open and rest in between, thus somehow lowering the progression of her hypertrophy. Fair enough, but after several hours on the drug, it did nothing to lower her heart rate. Frankly, it did little of anything, despite the ever increasing levels they kept giving. Despite this, no one was willing to stop the drug. Now, she has a new drug running that isn't working, and they added a third presser to counteract the side effects of this ineffective drug.

I feel like I'm taking crazy pills.

The one good piece of news was that we at least starting talking about weaning back the hydrocortisone. We have been on a big dose of hydrocortisone (cortisol) for a month now, when the original plan was to use them for 72 hours then wean off them. The attending ICU fellow tonight mentioned that hydrocortisone can lead to hypertrophy.

Okay, in that case, 1) we've been on hydrocortisone since July 21. 2) we have hypertrophy.

Am I missing anything?

Soooo...I asked him when we could start weaning off it. The fear of God came over him and he immediately began hemming and hawing about how long it would take to do it and that we'd have to talk about it and plan it out.

Ok, big deal, start talking and start planning, right? So, I pressed on and asked when could we at least begin the wean? Then, he passed the buck to BMT and said since it's their drug, they have to make the call. Alright, I know who to bug over there in BMT...

Bella is squeezing her hands so tight, she squeezed off her last fingernail on her right hand...

In the meantime, Bella has rapidly spreading petechiae, which is usually from low platelets. Bella's platelets are fine. No one knows why she has petechiae which has gotten worse and worse over the past 48 hours. Also, her right leg is discolored and swollen, and she is now way overhydrated (again) and puffy all over.

I feel like we've painted ourselves into a pharmacological corner by stacking so many drugs on top of each other, especially because Bella flat out looks worse today than yesterday.

It's just so hard to watch her slide so far back from where she was a week ago. Ugh.

In some good news... Daylon transferred back to 5D today!!! YAY, DAYLON! This is good for Daylon and good for Bella since she copies everything he does anyway. We gave her a hard time tonight, telling her that her boyfriend skipped out on her and she better follow him over there to keep an eye on him (He's pretty cute, you know).

My brain needs a rest. Please pray that the docs have the courage tomorrow to begin weaning Bella off steroids. It's time. My gut is YELLING at me about this one at this point, and that is exactly what I told Dr. Tolar. Hopefully tomorrow he will take the reigns and get this process started.

"BEEELLLLLLLLAAAA!!!!" Holy cow, I almost dropped her!

Tomorrow will be a fun day. Rounds aren't till 9, Ali gets to go on a play date with Ellery to the zoo, and mommy and daddy are going on a picnic date to Minnehaha Falls. Don't tell Ali! tee hee. Good night.

Always leave on a high note!