August 10: Day +39

Hi gang!

Well, this road has hardly been a straight line, and today was another example of that. We had a good night overnight. We had to pull back on all the weening as Bella went as far as she could tolerate, then said, "ALL DONE!" So, we held her ventilator and meds at a constant rate overnight and into the am. We knew today was a dressing and circuit change day, so there would be a lot of activity for Bella, so we didn't want to throw more weening on top, so we took it slow and steady through the morning, through dressing changes.

We were scheduled to change out her circuit and go back on dialysis at 1:30. Well, throughout the morning and lunch time, Bella was doing great. However, as we got closer to the circuit change, I began to get this weird feeling of dread. It started with the dialysis nurse, who repeated every step out loud. That made me nervous except for the fact that the renal doc was in the room sitting just a couple of feet away watching patiently. I figured, if she was calm over this nurse, than I could be. Still, the feeling lingered, and in fact, got more intense.

By the time we started up the circuit, I was in full panic/alert/bothered state, but I just couldn't put my finger on why. Sure enough, within the first minute of the circuit starting to dialyze, Bella's blood pressure tanked lower than I've ever seen it. No problem; they gave her calcium which immediately boosts blood pressure.

Then, it began.

For some still-unkown reason, Bella started wiggling and writhing from the dialysis process. They gave her a bump of versed and dilaudid. Nothing. They gave her two more. Nothing. Now, at this point, she was literally foaming and blowing bubbles out the little hole for her breathing tube. They went up on her precedex. Still nothing. All the while, the machine was getting weird, higher than normal, pressure readings. The dialysis nurse asked the nurse to pause the pump as she cleaned one of the lines to hopefully clear a clot. While doing this, Bella calmed down. However, as soon as they started up again, she started writhing again.

Here's the weird(er) part: We checked her pupils, and she was KNOCKED OUT on sedation, so whatever was occurring was happening without the brain's higher level involvement. From the neck up she was lights out. From the mouth down, she was writhing uncontrollably as if she was trying to scratch a full body itch... that was coming from inside. It was a pure physiological phenomenon.

At this point, I couldn't take it any longer. Something was wrong with Bella, and they seemed puzzled, but no one thought that maybe we should just STOP?! So I told them in no uncertain terms to stop the machine. They just looked at me in a daze for a second, and I repeated myself louder, "STOP THE MACHINE... LIKE... RIGHT NOW!" Finally, they got in gear and stopped the pump, and what happened? Within a few seconds, Bella's body calmed down. So, they went to rinse her blood that was in the pump back to her and she started in again, so they had to stop the rinse-back halfway into it.

It was as if the blood that was in the circuit to prime the pump (which was technically a transfusion) had some allergic or incompatible-with-Bella element in it, that when it was shoved through her veins, tickled or scratched its way through her entire circulatory system.

The weirdness continued: within a few minutes of switching off the circuit, Bella was calm. We sent a blood test and her blood gases were normal. Her vitals were normal. Her temperature was normal. There was no way to detect that ANYTHING had even occurred. At the time of this writing (10:30pm), there is still nothing back from the blood bank.

On the one hand, I was so mad at myself for taking so long to speak up, but on the other hand, at least I did, and at least they listened. Next time, I will open my loud*ss mouth a little sooner. Listen to your gut!

A little while later, Bella's renal doc (whom I like very much - very calm) came in and we talked about what our options were. She wanted to try again before the day was over so we wouldn't lose another 3-4 days pulling off 24 hours of fluid. She told me she had a different nurse, and she felt confident, so I thought we could at least give it another shot; we are totally dependent on dialysis right now, and we needed to see if it was a fluke thing, or something else.

So, we ordered up a new circuit, and we began the ramp up process, but not before our amazing evening nurse, Renee, rearranged the room fabulously! Given where Bella's new lines are, the dialysis machine couldn't really reach very well where it was. So, Renee put the IV pole at the foot of the bed. Bella's IV meds go into her leg now, so it's a short run to the foot of the bed, and this left room to move the dialysis machine to the head of the bed on Bella's right where the IV pole used to be. Bella's new Hickman basically sticks out her right shoulder, so this works great. Now the ventilator is at the head of the bed on the left, the dialysis machine is at the head of the bed on the right, and her IV pole is perfectly situated at the foot! Nice feng shui, Renee!

Anyhow, as we were getting ready to go on the circuit the second time, Bella started getting REALLY agitated, as if she knew what was coming. This of course made me really concerned. This time, however, I didn't have the same intense feeling I did last time. This time I was just nervous in general. They kept giving her more meds, but she was agitated and awake above the meds, and the PICU fellow just shook her head in puzzlement.

Time for music therapy.

I grabbed my guitar out of the closet and told everyone to make room, I needed to play Bella's birth song for her. Everyone was all for it since nothing else was working, so I saddled up to Bella's left and started to sing and play to her at the tempo of her heart beat. I sang her song two times through without stopping to allow her time to just home in on me in cancel out ALL THE OTHER NOISE in the room. I used the music like a snow plow and just PUSHED the other sounds off of Bella so that nothing but HER melody washed over her. Sure enough, she calmed down and her pressures all held super stable. I just kept going after her song and moved into two other instrumental pieces in the same key and tempo like a medley. When I finished, the renal doc applauded, and everyone was very congratulatory to Bella and her daddy.

Sometimes, where medicine ends, music begins.

Bella has heard her daddy sing her song to her since the day she was born, and it usually delivers when we are in a scary hospital situation. I sang it to her a cappella in the operating room at the beginning of her last two surgeries here. I sang it to her as they intubated her for her G-tube insertion in San Diego. I sang it to her as they gave her a lumber puncture in Orange when we thought she had meningitis. I sang it to her during wound care in the N.I.C.U, and a recording of it played in the O.R. at the moment of her birth. It's her "auditory binky!"

Here's why my wife is so amazing. I had played Bella's birth song as an instrumental for weeks before she was born every night to the belly. One night, Ang encouraged me to finally put words to it. I was hesitant at first; it just 'felt' like an instrumental, but Ali had her own birth song with words that she was born to, and it wasn't fair for Bella to be left out. So, that night, in their bedroom, on my magic legal pad, we penned Bella's song. Man, was that the right call. Who knew just how many times in how many situations I would pull that song out, especially a capella! Thanks, Angelique. Without your encouragement, I would have been saying, "Hmm,hmmm,hmmm hmmh mmhhhh," in the O.R. instead of...

Bella, Bella, your name means beauty

beauty that comes from inside

beauty we all can see

Bella, Bella, abundance is the game

give to others everything

and they will do the same

Live, Love Laugh,

Life is a game

to play so that everyone wins

Bella, Bella, life goes by so fast

don't get stuck

in the future or the past

Bella, Bella, you're blessed with everything

strength, wisdom, intelligence

anything you need

Live, Love Laugh,

Life is a game

to play so that everyone wins

But don't be afraid

to ask for help

God will always answer you

in his or her own way

Bella, Bella, your sister loves you so

she'll watch out for you

and help you to grow

Bella, Bella, remember life is good

give to it everything

you want in return

Live, Love Laugh,

Life is a game

to play so that everyone wins

Live, Love Laugh,

Life is a game

to play so that everyone wins

(If you haven't heard this song sung before, watch the video on the right called "Bella's Beginnings (Extended Version))

Fabulous socks of the day...

So, at 8pm tonight, Bella was back on Prisma dialysis successfully, and fully tolerating it. In other good news, her ventilator settings are so low, we can take her off the vent for a while to give her lungs a little "test run" to see how they do on their own. As it is right now, she is initiating about a third of her breaths per minute, so we want to ease her lungs back into running all the time instead of intermittently... which is already better than not at all, like when she was paralyzed just a few short days ago!

In other news, I forgot to mention that our FEATURED PARTNER of the month of August is The Ronald McDonald House here in Minneapolis. Up to 50% of all proceeds from sales of Bella's Blessings: a Humble Story of Providence will go to this amazing house. They are heaven-sent here. It would have been SO MUCH HARDER to manage all this on our own. We are ETERNALLY grateful for this program, and countless hundreds of volunteers who contribute hundreds and hundreds of man hours a month. Please go read about them on our FEATURED PARTER page, and please buy Bella's book; you'll be contributing to us AND to Ronald McDonald House at the same time! Pretty cool, right? :)

Good night, and thanks again for all your love and energy. You make this possible.

Ali says, "Good night!"