August 27: Day +56

Hello, Happy Friday (or Saturday) to you all!

Well, we had a breakthrough today! YESSSSSSSSSS!!!!!!!!!!!!

Remember how we couldn't figure out how to get Bella's blood pressure from bottoming out? Remember how we started her on vasopressin along with the esmolol on Sunday, and her pressure has been in the toilet ever since?

You're gonna love this.

I found out in rounds this morning that the team learned yesterday evening that...

... Prisma dializes vasopressin.

Seriously. After being on the drug since Sunday, and on Prisma (continuous dialysis) the whole time, the team just found out last night about the drug interaction with dialysis...

So, we started going UP UP UP on vasopressin today. I told the team for the second straight day NOT to look at the dose, but look at the patient. Since the dialysis was dialyzing the drug off, WHO KNEW how much was actually being metabolized?

At one point, Sam the attending ICU doc, who I really like a lot, mentioned as he was walking out the door that he had half a mind to get rid of the vasopressin and go back to norepinephrine. That got Chris, Bella's nurse, and me to brainstorming. We began to think about what the days on vasopressin had been like. Sunday... okay... for half the day. Monday... bad. Tuesday... bad. Wednesday... bad. Thursday... pretty good... hmmm... what was different about Thursday? Why were her pressures so strong?

We were off Prisma till late in the afternoon! The vasopressin wasn't getting dialyzed so it could actually do its job! That was it: Vaso gets dialized, norepi doesn't. We needed to go back onto norepi and get rid of vaso. The only reason we ever switched was due to esmolol, and we were off that, so why were we on vaso if it wasn't working?

I literally ran out of the room to get Sam. He came back in and we laid out our argument. He bought it. Let me rephrase... we laid out why HIS hunch was the best lead we had. It still didn't solve the cause, but might at least treat the symptom in the meantime. Well, how can anyone refute their own idea? ;) He agreed to go back to norepi. Within about an hour back on, Bella's blood pressure jumped up and they began to wean off the vasopressin. The goal through the night is to wean it off completely and return solely to norepi.

I can't tell you how happy I am tonight. We also went down on her narcotics, and went up on her methadone and scheduled her ketamine on a regular basis. So, we have a new sedation profile that we are transitioning into with excitement. We will move off versed and dilaudid, and remain on ketamine, methadone and precedex. When I left tonight, Bella's pressures looked GREAT, and she was clearly awake, but seemed more peaceful at the alert state she was in than in recent days.

Now, hopefully tomorrow we can begin to pull fluid off poor Bella since she is an absolute giant right now. I feel like we just chased a ghost of a heart murmur for 10 days now, and we are just now getting back to where we were. I am a little frustrated by the process, but this is the nature of the beast. It is like seasons. Just because you may want summer to come right after winter, you can't force it to. You need to go through spring whether you want to or not. Similarly, you can't move any faster than a slow crawl in the ICU, regardless of how impatient you (I) might be.

I will share a cute moment today... we were taking off Bella's headgear so we could roll her over and change the dressing on her ulcer. The RT had all the bandages off Bella's face, and was just holding the tube in her mouth for a minute while the nurse was administering a drug. Bella was awake with her eyes open, so I started to sing one of her songs to her. Well, while I was singing, Bella scrunched up her face like she was trying to smile. Her whole affect brightened! Poor thing is so swollen right now that she could hardly move but she smiled with her entire face! The RT noticed also and we had an, "AWWWW, SHE'S SMILING!" moment in the room. It was really tender and sweet. Bella has endured much, and will need to endure much more, but I will say that if you just give me a moment like that to me every now and then, I'll be up for being beside her the whole way!

Lastly, Ali has been practicing her letters and impressing us with her ability to write pretty much the entire alphabet now. What has been really interesting is that she doesn't consciously know what she is spelling when she starts drawing letters... BUT, recently, she wrote HLA and TPA in my notebook. These are very specific transplant acronyms that she no doubt has heard.

Today, however, takes the cake. What word does the below picture resemble?

You got it.... PRISMA. We joke about "Rosy the Prisma Machine," but no joke here! She doesn't know that she was almost spelling prisma; she never made a comment about it, and she has no interest in trying to spell words correctly yet. What's on ALL our minds 24/7 up here? Bella.

Last, thank you all who have posted these past 2 nights. We are so flattered and humbled by your outpouring of love and support. I again say that the reason tragedy and "bad things" happen in the world is for us to have the opportunity to KNOW ourselves as loving, nurturing, compassionate, helpful human beings. Those opportunities are there every day, but tough times seem to "turn up the volume" on the opportunities to help another human being. This truly appeals to the highest parts of our nature and we experience ourselves as connected to another, whether giving or receiving, and we experience ourselves as good, and we have an innate desire to KNOW that we are in fact good after all. Bella in turn has come to earth with EB to give us all the opportunity to care for her... to CARE FOR ANABELLA. It is in doing this that we get to know ourselves as good people by wishing good upon another, and for many of you, another that you have never even met. Simply extraordinary. We get to see by all these comments, that there is a lot of good in the world, despite what the major media outlets spew every day. Miracles abound in OUR community, in our world. This is our community, and we feed each other.

Thank you (the person sitting in your chair right now - yes, you!) for making this community so special. It is an honor to be in community with you.

Good night.