August 3: Day +32

"Stable to Slightly Improving..."

...was the prognosis this morning. I actually wrote it down in my notebook since I couldn't believe my ears. The tone of rounds was cautiously optimistic this morning. Bella's ventilator settings have gradually been lowered and she has tolerated the changes well. Her counts were GREAT today... well, let me just...

...get to the numbers first:

Weight: 12.5 (from yesterday) no one got a weight today.

I/O: +691 (ugh. Amazing what happens when you are short staffed and get stuck off dialysis for 9 hours instead of 3)

WBC: 9.7 (AMAZING!)

ANC: 7.7 (YIPPEE!)

BILI: 2.2 (okay, but creeping up since we've been off j-tube feeds for 3 days... her blood pressure med essentially squeezes her intestines, decreasing blood flow to them, so at a certain point, if you put food in the belly and there isn't enough circulation to digest it... could be bad... she still gets all her nutrition via IV fluids called TPN)

CSA: 192 (Yay! I'll take ANYTHING under 200 at this point... had to get medieval again in rounds on the BMT attending and Pharmacist to make sure they are not blowing this off)

Today, Bella's blood pressure has been stable enough to start pulling some of the fluid out of her that they left in her yesterday. This is great because it normally takes Bella several days to get 700mL off her. We don't want to be stuck in ICU for 5-6 extra days just because 2 nurses called out on 8/2. That would be lame. We have to get her back down to her baseline weight of 10.7 before we can start talking about extubation (taking her off the ventilator). Yesterday, when I met with Dr. Tolar, he seemed to think (all things being equal) that we might be able to start that process roughly a week from now. After yesterday's debacle, it might be a little longer.

We're also not quite that optimistic as there is still a piece of the puzzle that we haven't solved... her hemodynamic instability i.e. her inability to maintain her blood pressure on her own. It's like an episode from Columbo. I feel like Peter Falk; underestimated, but tenacious. I have had more than one doc prescribe a drug that has momentarily made Bella's numbers improve, then hang their hat on "that was the culprit," only to have the condition endure after they rotate off the unit. I'm still here... taking notes...

Anyhow, don't get me wrong; today overall was a wonderfully boring, uneventful day! We need a mix of those in the room to balance out the action and "messing with Bella" that went on yesterday. The one showdown we had in the room today was when they wanted to turn down the dialysis machine to "net zero." They had it running net zero over night, and her pressure looked great so at 1pm we went to net negative 10. That means that we pull off 10mL more than we give her every hour. It can cause her pressure to drop, and by 4:00, her numbers were starting to go low again. The resident wanted to drop her to net zero, but I wasn't having it. I told the nurse to bump up her blood pressure med a little as we have had to do on many occasions, so she went to the docs to ask, and came back with 'that look' on her face. I told her to send them in.

The BMT fellow was here at the time and I invited her to stick around and watch the fight if she wanted to, but she elected to remove herself from the room.

Again, to reiterate, we netted +900 over the past 2 days, so we are losing some serious ground on our fluid loss plan, so as Dr. Verneris said, we don't want Bella lingering around the ICU any longer than necessary. I stated my case, then the resident, who I am growing to like a bit more each day, stated hers. Then I counter-offered, and just as I counter-offered, BING, the blood pressure numbers popped up on the monitor and Bella had rebounded! That's my girl! She knew daddy was fightin' for her and squeezed a little to help out!

I left for dinner thinking I head successfully headed off the attack, and when I returned, found out that not only did the resident honor my offer, but even acquiesced and followed my original wish when Bella dipped during dinner, and upper her meds while leaving the prisma at net negative. Since we returned from dinner, her numbers have looked great all night, and we are still pulling off 10mL an hour! Go Bella!

So, as we close for the day in our little fishbowl, Bella continues to hold her own. She's far from out of the woods (the charge nurse tonight told Ang and I that Bella is currently the sickest patient on the unit - to which we simply find hard to believe), but we're not getting worse. Remember, when we came in here, we had respiratory failure. Now we have respiratory failure, renal failure, V.O.D., and a pleural effusion on her right lung, so things haven't gotten better since we arrived in the PICU 30 days ago, they've progressively gotten worse. So to hear today that her condition actually improved from yesterday was the first sign of sun after a l-o-n-g rain storm.

In other news...

Ali is having the time of her life up at the cabin, and that makes us SOOOOO HAPPPPPPY. You just want your kids to be happy at the end of the day, and to know that while one fights for her life, at least the other has days FILLED with fun, play, and JOY. We'll take it.

Iconic...

Magical...

Ben, Jack, and Ali... summer buddies!

Thanks for your continued love, prayers, and strength. We really appreciate that you are still by our side in all of this. We will continue to fight the good fight, and we will continue to keep the faith, just as you have. Thank you!

Good night.