July 23: Day +21

mommy and daddy in Bella's room...

Another quiet day... mostly...

I arrived this morning at 8 am to the mixed blessing news that the dialysis machine had crashed at 11 pm. This was a mixed blessing because on the one hand, no fluid was being taken off Bella for 9 hours. On the other hand, it gave me the chance to change her line dressings while off the super finicky PrismaFLEX (don't know what the flex is for...). When I had to do her line changes while on the machine two days ago, I felt like McGuyver dismantling a nitroglycerine bomb or some such outlandish thing with some gum, toothpicks, duct tape, and a lighter. Every time I would so much as move Bella's arm, the machine would start alarming... DANGER DANGER - BOMB WILL EXPLODE IN 5 - 4 - 3 - 2 - 1 ...

So, I got my window to change dressings. Problem was that it was during rounds, and Murphy's Law dictates that the moment I had on gloves, a mask, and had exposed the line to the world, I'd hear the knock on the door signaling that the herd had arrived and off they'd go without me. Amazingly, for some reasons they couldn't say, rounds got held up for 2 hours today, so the knock never came. So, I got clean dressings on both her lines. Normally at 8 am, I am not fully alive, but given the anxiety "Rosie-the-Prisma-machine" gave me on Wed, I was ON FIRE this morning maximizing my "mess-with-Bella" window! Who needs coffee when the threat of a big expensive machine crashing due to you hangs over your head?

Prisma got up and running nicely, and Bella was all but off Dopamine in the process! She hovered between 5, 2.5, and 0 Dopamine throughout the day while on the machine, which means the 3-day (today is day 2) Hyrdocortisone therapy she is on is working well enough to maintain blood pressure while on Prisma. This is good for now, but it remains to be seen why her adrenal glands aren't working well enough that she now requires steroids to keep her up and running.

When we finally got to rounds, things actually went fast, which meant there wasn't a lot to discuss regarding any changes to her condition, or changes in the plan for the day. That's a good thing. Here's why...

Here are the numbers:

Weight: 12.7 (down a whole kilo from yesterday! YAY!)

I/O: -152 (the first time we've actually been net negative in fluid volume in FOREVER! YAY!)

Creatinine: .67 (up a little, but no cause for alarm)

BUN: 21 (up a hair, but no cause for alarm)

WBC: 5.6 (up from 3.1 yesterday! YAY!)

ANC: 3.6 (up from 2.8 yesterday! YAY!)

Bilirubin: 3.4 (down from 5.6 yesterday! YAY!)

CSA: 300 (down from 392... target is 250...YAY!)

So... as you can see, on paper things were good this morning! It was a strange feeling having rounds go so smoothly. Each morning, I enter rounds with anxiety for which numbers are good and which are bad because as you've read in prior posts, it's usually a mixed report at best.

At this point it was 11 am, and the major work of the day was already done. Nanny came to relieve me again so I could get out a little. My friend Logan took me to lunch and we sat on a park bench in the shade in the midst of a beautiful sunny day here. Then, I went back to RMH and took another nap; I'm still feeling like there's a bug trying to take hold. I'm on massive amounts of vitamin C and sleep, and that is helping. After my nap, I returned to the hospital so Nanny could go pick up Ali and get dinner together. Angelique brought me dinner and we hung out with Bella till about 9.

Mask time, courtesy of our good friend Sara back home... thanks, Sara!

We really miss Bella.

She feels so far away.

The docs told me today to brace for 2-3 more weeks in the P.I.C.U.

I am tired, and I am sad. I was anxious for this procedure before we got here, but I am scared of where we are. I always thought that because Bella was so healthy going into this, that her organs weren't at risk, and that her life really wasn't at risk. Sitting in my hospital chair being unable to even SEE Bella because she is now completely obscured by machines... my heart is heavy in my chest. I force a tired smile when with family, and Ali genuinely lights me up inside, but I just feel, well, heavy. This too shall pass. I know this. Yet here in America, the land of feel-good-no-matter-what, this feeling, while perfectly appropriate and natural... I feel like I'm supposed to "do something" with it. Most people medicate it, and I usually transform it, but not tonight. It is just too heavy. Tonight, I just go to bed with it, and that's okay, too.

My view from my chair of Bella...

I could rejoice in the numbers today, but numbers aren't Bella, and Bella is far more than numbers. I have been managing the numbers and the skin, but what about the girl? As music therapy professor and author David Aldridge so eloquently says, "Who is treating the SELF inside the patient?" Our vibrant baby girl hasn't moved, made a sound, or opened her eyes in just under 3 weeks (19 days now), it has worn on us, despite what the numbers say.

We read to Bella, talk to her, I play guitar for her, sing to her, kiss her forehead, mommy kisses her hands, and each time I do so, I know she can hear and feel us. After all, her ears are still working and her brain is still processing everything she hears; she is just paralyzed from responding. She is trapped inside herself. She won't remember any of this due to the drugs she is on, and for that I am thankful. We just miss our little Bella. Nothing to be done about it, it just is. I am just so scared to lose Bella. Ugh, it hurts.

Good night.

A photo essay of the machines keeping Bella alive right now...

"Rosie" is the dialysis machine that is pulling the fluid out of Bella slowly and doing her kidneys' jobs for them until they recover...

"Huggy the Bear" (its real name is the 'bear hugger') inflates a heated 'blanket of air' over Bella to help get her temp back up. Having all her blood leave her body and flow through Rosie cools her blood, so Huggy tries to counteract one of Rosie's side-effects.

"The Vent" is the breathing machine that controls Bella's breathing for her while she is paralyzed.

The EKG machine follows Bella's heart rate, blood pressure, central venous pressure, respiratory rate, and oxygen saturation. This is how we "see" how Bella is responding to her many therapies and protocol.

"The Pole" manages all Bella's IV intake. Let's see how many I can remember: Vecuronium, Fentanyl, Versed, Dopamine, TPN, Lipids, Platelets (as needed), Formula, Calcium, CSA. That doesn't include the drugs she gets through her G-Tube...