July 24: Day +22

Weekends are nice... aren't they?

On the one hand, they are nice and quiet on the unit as long as things are going stable (Bella). On the other, it's tougher to get all the right minds together should things NOT be stable (Daylon). For those of you that don't know, Daylon has been having seizures due to pressure building on his brain from bleeding due to defibrotide. They started last night, and have continued this evening. They can't operate to empty the blood and relieve the pressure; it's too big an infection risk at this stage. They just have to wade through it and wait it out.

I had just hit PUBLISH POST on last night's post when my cell phone rang. It was midnight, so instantly, my heart jumped in fear. Sure enough, it was Brian, Dayon's daddy, explaining what happened. He needed to get over to the hospital and join Jennifer and he asked me if I could babysit the (4) kids in their room for them. So, I got a crash course on who was sleeping where and what they needed and off he went. I just sat on his couch crushed with sadness and fear.

I fear that we are in some sort of nightmare that just keeps getting worse. Our two families are so close that what happens to one is felt by the other. In addition, the two kids have followed an almost identical trajectory down down down throughout this BMT process, so as Daylon goes, usually so does Bella. Our kids are both in critical condition in the ICU and we are far from home. Something just feels wrong. How did we end up this far off course? BOTH of us?

Brian came home at 3:30 in the morning while I was up wrangling one of the twins (Violet) back to bed... good timing, because I was failing "tucking-Violet-into-bed-with-her-blankie-spread-UNDER-the-big-blankie-first," and she was NOT happy with me! LOL. He was like the Cavalry saving the day!

This story is so interconnected with us because Bella just went on defibrotide, and its main risk is bleeding. What makes this scary for us is that she is also on continuous dialysis, which increases her chance of bleeding, since both are anti-coagulants. So, we have double the risk, and to watch Daylon bleed with essentially half the risk is scary. To be fair, it doesn't tell the whole story; the two are not identical, and have a different subtype of the disease, but to have witnessed so much of their stories coincide so closely, it is pretty hard to not be ten times more scared about defibrotide today than yesterday. Daylon was on day 19 of 21 of defibrotide when he started bleeding internally from it. We are only on day three of 21.

Beyond that piece of the story, here are today's numbers:

Weight: (didn't have one... scale was malfunctioning on Bella's bed today)

I/O's: +330 (Prisma was down for 11 hours from 11pm the night before to 10 am yesterday)

Creatinine: .43 (best yet! YAY!)

BUN: 13 (best yet! YAY!)

WBC: 5.6 (same as yesterday... we'll call it a draw)

ANC: 3.5 (down one tenth... no biggie)

Bilirubin: 4.3 (up .9 from yesterday... booo)

CSA: 421 (high due to being off dialysis for so long)

So, another mixed bag, but hopeful because if CSA and I/O's were up so high due to being off dialysis, why did her creatinine and BUN drop to record lows? Remember, those are measures of waste products in the blood. Could it be a hint that Bella's kidneys were doing a little filtering of their own? Hard to say, especially with the continued absence of pee. Hopefully, Prisma stays up and running through the night so we can have a solid, 24 hour period on it to see what kind of impact it can really have if it would just stay running!

In other respite/recreation news...

Ali had an all-day play date with Logan and Erin's kids, Owen and Ellery. Logan took them to the park in the morning and Ali got to go swimming. Then, they hung out at their house playing together till 9pm tonight! Thanks again Erin and Logan! We are so grateful to have you here.

Mommy and Nanny went to... Mall of America for some retail therapy!

Daddy had a man-date with Logan and Mark at Mark and Lisa's house. They are the good friends of Logan and Erin we met at Logan's BBQ before Bella was admitted. Mark is a whiz of a cook, and a guitarist as well. So, after some amazing chicken and vegetables on the grill, we retired to the basement where Mark let me play his prized Gretsch Tennessee Rose guitar while he laid down the rhythm on a snare. We began with a little Johnny Cash (Folsom Prison Blues), and then I took off into a blues and funk revival from my youth. Then, I dialed in his delay petal and stormed through an 8 minute solo I call "21st Century Mojo" that I haven't played in over a year. I finished with a latin-inspired song I wrote when Bella was born called "Providence." It felt SOOOOO GOOOOD just pouring out my pain and my joy through his beautiful instrument. I was so grateful to be given such an amazing instrument to let loose on; I treated it with due reverence, and allowed it to receive every thought and every feeling I had. It was cathartic, to say the least. I'm gonna leave you with the words to Providence...

Looking at the situation

Through the wrong set of eyes

Wanting someone else's life - not mine

Angry at the cards I drew

Who dealt me this hand?

Trying to hit the UNDO switch

and turn back time

and I'm here to

try to understand

Providence

Providence

Providence

Kneeling down upon my knees

The burden was lifted

He took it with a smile

And with music He said,

"So, you're here to

try to understand?"

Providence

Providence

Providence

So you keep on walking

But you keep on falling

So you keep on trying

But you keep on failing

And you keep on hoping

But you end up swearing

That there's just no way for you

To have just what it is you want

But I'm here to

Help you to understand

That the key is already

In your hands

Providence

Providence

Providence

Providence

You can check out a new photo collage to a scratch track of the song HERE.

Sometimes it's easy to lose sight of the light in the middle of the darkness. If you can remember to find the light within you, you never lose sight of it. However, sometimes, it takes so much to keep that light burning, you can only see a few feet ahead. That's okay. Your headlights may only shine a few hundred feet up the road, but you can drive across the country a hundred feet at a time. And so it is.

Good night.