August 24: Day +53

Ali rocking mommy's reading glasses...

And the roller coaster continues!

Wow, what a day. This morning, Bella's pressures were in the toilet again (like 41 over 21 at one point), and they infused her 5 TIMES (2 saline boluses, 2 red blood cell packs, and one platelet pack) over night to try to boost her blood pressure. Think that's enough fluid? Bella is leaking fluid out of her blood vessels out into her tissues faster than they can infuse it. No one knows why. Normally, this can be a BMT issue, but is usually healed by day +30. Anyway, her heart rate also climbed up to 130. So, now the only positive effect of the esmolol had disappeared, and her pressures were 40's-60's over 20'-s to 30's no matter what they tried. They just couldn't get it back.

The plan in rounds was to get another echocardiogram tomorrow, but they moved it up to this afternoon. I have still not met with a cardiologist at this point, and when the nurse found this out, she was incredulous, so she ordered a consultation for me. So, the ultrasound tech came in and did the ultrasound, and a little while later, Dr. Pyles came in right as the attending ICU fellow was in the room. Perfect. Dr. Pyles said the obstruction was gone! The hypertrophy was still there, but when Bella's heart pumped, there was no "gradient" - no obstruction to the blood flow. He said to cut the esmolol dose IN HALF. The words were barely out of his mouth before our nurse was already changing the dose on the med pump!

Esmolol has been a controversial call, and while we had one day on it that looked okay, we've had two subsequent days on it in the toilet. When her pressures were fine, I was okay with it, but she couldn't hold it up and to be leaky with low blood pressure, it's not the best choice, especially when it was no longer holding her heart rate down. It has been debated in offices, in Bella's room, and I was told even at the lunch table in the physician's lounge today as to whether it was the right call. Hey, whatever the right call may be, the obstruction is gone, and it's wrecking her BP, so we are phasing it out as rapidly as possible. After an hour or so, Dr. Pyles had the echo team come back and do a quick scan while she was on the half dose to see if the obstruction returned. He stood across the room and directed the procedure himself, and sure enough, it was still gone, so he halved the dose again! So, now we are at 1/4 the dose we were two hours earlier, and you'll never guess...

... her blood pressure returned! Go, Dr. Pyles!

The BMT fellow came in to see me and she asked, "In your own words, how would you describe the past two weeks for Bella?" Well, I broke it down for her. I explained that we just spent 9 days chasing this heart murmur around and around with 3 echos, a cardiac MRI, a chest CT, and two new medications, when two weeks ago, we were two days away from extubation when Bella got an infection. While I appreciate all the due diligence, I still felt like we were running around in a circle/painting ourselves into a corner, whatever phrase you want to put on the whole thing. She smiled. Her response was, "Well, we feel that since Bella has gone on esmolol, she hasn't been happy, and we haven't been happy, so we're gonna get her off it." If only I could speak that concisely.

Now, you know I've turned myself inside and out like a yogi to get behind this drug. It was no easy sell for me. I was only too happy to hear that it was going away. I had no problem hearing that, believe me, despite the work I did convincing myself it was the right drug at the moment. Hey, if the obstruction was still present, things might be a whole lot different, but as long as "it" is gone, get the esmolol outta here! To be fair, I choose to thank the esmolol for whatever role it played in clearing the obstruction, and now it is time for it to be on its way.

We also had surgery come in today to re-suture Bella's hickman to her shoulder. Both sutures had been pulled out of her skin during recent circuit changes, and there is now a deep pothole in her shoulder where skin used to be. There are two teams that touch that line, nursing and dialysis, so I will be putting them both on notice tomorrow explaining that they pulled out not one, but two stitches out of Bella's shoulder, and that they need to be more careful going forward when they take her on and off her circuit.

It was a long day, but in the end, Bella is stable again, and we all feel like we've put this heart fiasco past us. we will get another echo tomorrow to see what her heart looks like on the 1/4 dose of esmolol. Please pray that it looks the same and that we can D/C it for good tomorrow.

Meanwhile, enjoy the Ali show... Good night.

Ali starring in "The Little Mermaid," again...

Ali telling jokes to Bella's nurse...

Ali posing with the therapy dogs at RMH...