Saturday, July 24, 2010

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


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?"


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


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.


  1. What a wonderful thing you did for Jen and Brian last night, so glad you all have each other in Minnesota. Hopefully the docs have learned from Daylon's situation and Bella will be cared for accordingly. I will hold this vision for you over the next 18 days. Get some rest on Sunday, we love you all. Jen, Jim and boys.

  2. I've been thinking of daylon all day...And Bella, too. So happy you have each other for support. Had to wait for update before bed. Hope Sunday bringg peace for everyone.

  3. Super happy to read that everything is holding steady and peacefully. Man, the grilled chicken and veggies on the bbq, look amazing! I checked into Daylon's blog tonight also, and I'm so relieved to read that he is doing much better. Great to hear that the pressure in his arm has gone down; therefore, he was able to have slight movement in his hands...great news...Thank You Lord for hearing our prayers! Although bitter sweet, I'm thankful that you have another family to find comfort in...Jen & Brian sound like great people. It is comforting when someone else can relate to your situation and emotions.
    I pray that the Lord watch over Bella tonight. I pray that the Lord lay his hands over the machines and not allow any malfunctions to occur. Please Lord, triple your guard of angels that are with Bella in her room for the remaining 18 days on defribrotide. Please let there be no hiccups along the way. I pray with all my heart, soul and mind that from this day forward, the days will come and go with no flaws and just be simply seamless to a full recovery.
    Thank you Lord for a great today...please be with Bella tonight, early morning and all day tomorrow. Touch about the minds & hands that are attending to Bella. Please continue to comfort Ang, Tim, Ali & family. Thank you Lord for hearing our prayers and seeing our hearts desire for Bella. Love you Jesus name...AMEN

    ps...GREAT song and photo husband and I watched/listened together. We are praying non stop daily for Bella...we talk about her in the car, at home, with our families...we are always thinking and praying for your sweet Bella doll. May God give you a good nights rest and a peaceful & joyful Sunday.
    Good night...The Baca Family

  4. Reading your blog about your beautiful Bella everyday I can tell what a great daddy you are to her and how lucky she is to have you. I also follow Daylons blog as well and I am so grateful that you and Ang have Jen and Brian and visa versa. You are so wonderful to help them last night with there little ones. You were their angel for a time. I can only imagine the heartbreak you must go thru watching Daylon and Bella mirror eachother and if something goes wrong with Daylon, the fear you must feel. You are so strong! My heart aches for your family and I have this love for you guys even though we have never met. I pray each night for both Bella and Daylon and my prayers will continue as long as they are needed. No matter how long that may be.
    I'm glad to hear that all of you were able to be normal for a while and just let loose and have a good time. Good for you!!

    Much Love and Prayers,

    Amber McLaughlin, CA

  5. Praying hard for both of these babies. It is good that you can get out of hospital and let loose some of your stress even if only for a moment. Bella does not need to copy every thing Daylon does. Pray both of these babies wake up free of EB! Brenda MN

  6. Sending prayers for both of these precious babies, and hoping that they and you can catch a break soon.

  7. Music is such a powerful force and means of expression. Thanks for sharing your song and those great pics of your family. As always, keeping Bella and Daylon covered with prayers. Here's hoping for a good day!

    A friend in NC

  8. Thanks for the song and the beautiful pictures. You sure are something. The love you have for your family is remarkable and very touching. I am honored to be able to share your story. Prayers are coming your way for your beautiful Bella.
    Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31
    Love you guys. Love Leah's Nana

  9. Retail therapy is the best! Can you explain why the Prisma keeps going out? Does the hospital have crappy equipment or is it the way Bella's body receives it? Praying for complete healing.

  10. Wow, I hear all of it. I can't say I get it, but want you to know you are heard -- all the anger, the heartache, the disbelief, the fear and the faith as well. We are all holding you and Bella inside the big bubble of our prayers and intentions, hoping it brings you comfort and strength. Love is so powerful. And you are surrounded in it. Providence.

  11. today's post brought me to tears. you and your family and all the other EB BMT families are amazing. i thank you for documenting your journey so honestly and frequently. it really helps me feel connected to these kids. i have a daughter who will turn 1 in 6 days and earlier today i was watching her walk around barefoot outside, bending to grab things, occasionally falling but although i had a watchful eye i was never too worried (as i'm sure you understand having a non-EB kiddo too...) and i was struck by the fact that this is what bella and daylon should be doing too. they are just a few weeks/month older than my daughter and yet they are fighting for their lives. it's not fair but you undertake the struggle with such grace. i'm thinking of bella and daylon daily from WA.
    ps. not that you have time for it, but if you want to see pictures of my daughter you can at

  12. Thank you for watching the kids for us. You're a lifesaver. I think I'd be across the river on the pysch ward if your family wasn't here with us! Love you guys! Jenn

  13. I cannot imagine how scared you guys must be...watching what Daylon is going through and wondering if Bella will have to fight the same fights. Daylon's family is in our prayers as well...You are all so brave, your faith is so inspiring...hang on to that!
    All our love!