August 31: Day +60

First off, thanks for the happy birthday wishes. I really appreciate it.

Out of the three things I hoped we would accomplish with Bella today, two were achieved. You can't really ask for more than two changes in a day around here... it's a tall order, so I'll take it.

First of all, my day started at 12:15 am when the room phone rang. By the second ring, my body was already in the air heading toward the phone as the blood in my body started to immediately freeze and my stomach squeezed into a knot. It was at 12:30 am the night Bella was born that I got the call in mommy's recovery room that Bella had coded. So, I have a little PTSD from after midnight calls from nursing. Last night, I could hear myself answer, and the person on the other end of the phone started with, "Mr. Ringgold?"

I hate when people call me that. That's what the resident said the night Bella was born.

The night nurse quickly began to relay the events of the prior hour and a half. Yesterday, you may recall, we began Bella on phenylephrine in an effort to transition her away from the norepi. The thinking was that the high dose of norepi Bella was on was causing her dynamic outflow obstruction to return. Norepi squeezes the heart and the vasculature, whereas phenylephrine just squeezes the vasculature, but doesn't get dialyzed like the other pure presser, vasopressin, did.

Well, the trick was going to be how to roll into the phenyl and out of the norepi smoothly.

It didn't go smoothly.

The docs went up too high on the phenyl without pulling of the norepi fast enough, and it basically froze her extremities. They stopped getting cuff blood pressure readings altogether, her hands and legs turned blue and cold, and the blood pressures they were getting weren't good. So, they pulled way back on the phenyl, and added nitric oxide gas to help her breathe better. Apparently that started to go south at the same time. The attending doc (not resident or fellow) spent 90 minutes in Bella's room trying to get a blood pressure with little success.

Meanwhile, as the nurse is rattling off all this information, he hasn't said, "Bella's fine now" yet, so I start to get nauseous and I could hear the body I was in saying, "okay," and "m-hm" at the proper rate, but the voice inside me was saying much louder, "oh God, oh God, oh God, oh God..." Finally, I could feel my stomach preparing to empty, so I got the nurse off the phone and ran to the bathroom. Luckily, no emptying took place (that's just the worst....), but I was dizzy and shaking from the story nonetheless.

Not a good start to the old birthday.

Needless to say, Angelique and I couldn't sleep a wink after that.

When I walked in to Bella's room this morning, a new machine greeted me. It has nitric oxide funneling into Bella's ventilator to help her breathe better, and her blood pressure was still in the toilet. She was getting yet more fluid to prop up her blood volume temporarily when I walked in. Same old same old.

So onto rounds. At least in rounds we decided to get an A line put in today, and we decided to try a new dose and type of steroids to try to actually treat the inflammation in her blood vessels, rather than just replace what she should be making on her own to handle the stress of the situation. The third item I was pushing for but didn't get? To finish getting off the norepi and flying just on phenyl for one day to at least try it. We never made it, and the doc was ready to scrap it. Unfortunately, that would still leave us with low pressures and the dynamic outflow obstruction. Too much phenyl however combined with the norepi, caused poor perfusion in her extremities. It also caused "mitral regurgitation" which is when the vasculature being too tight causes the blood to push backwards from the left ventricle back into the left atrium. Don't want that, either. The hope is that once off norepi, both problems go away, but we have to walk a razor's edge to get there, and quite frankly (and rightfully so I freely admit) no one wanted to do it until the A-line was in place. Unfortunately, we didn't get that in place to roughly 5pm, too late in the day to retry "titration (transition)."

So, the A line is in (and looks mighty spiffy - who dressed that puppy? :)), and we began the new dose of the new steroid. We'll hold off on the titration till tomorrow, and they'll no doubt give yet more fluid overnight (they do every night... they wait till I leave because they know the pain they would endure trying to do it while I'm there... just kidding), then in the morning they'll say in one sentence that they ran the Prisma net zero, but she'll be several hundred mLs of fluid up on the day. At least that is how just about every other day in the past two+ weeks has gone. Let's hope I'm wrong! This is one of those times I'D LOVE TO be wrong!

In other news, we were on our way out the door for pizza at my favorite spot when the entire staff at RMH was setting up for a Luau in the front room. It had been drizzling, so they moved it indoors, and right in the line of sight of one Ali Ringgold. Needless to say, the grass skirts, hula hoops, lights, and music were too much for a girl to resist. We never made it to pizza, but Ali had A BLAST at the luau, and watching her that happy, well, that was a better gift than pizza. Those of you that know me well know that's a big deal, as I am admittedly a certified pizza-holic, but you know, that parent gene... delighting more in your kids than in your self... this isn't the first time I've let Ali pick how my birthday went. It took me a few minutes to realize I wasn't getting outta RMH, and that the cold sloppy Joes were going to have to do. I was slow to come around, but in the end, we had a lot of fun.

Then, it was off to visit Bella and share some of the Aloha spirit with her!

P.S. Don't give 4 year olds cake at 10 pm, even if it's a sliver. It is now 11:44 and Ali is totally out of control screaming and crying like a maniac, of course claiming that's she's not tired. Epic ending to a long day.

P.P.S. The cake in question? Baked by Ali and mommy with lots of love! It was GREAT!

Good night.