Monday, July 12, 2010

July 12: Day +12

The ladies are in the house!

Okay, numbers time!

I got all cleaned up and arrived in my Sunday best this morning to deliver a message to the herd: I am on your case, and I'm sharper than the pajama-wearing, coffee-mug-gripping, can't-see-outta-my-puffy-eyes-before-twelve-noon-looking guy that you may have mistaken me for in the past week. Today's Monday; it's a new week, and I have a new assignment: THE HERD.

The herd is the affectionate term I use for the various people that round at the hospital, because they push around Computers On Wheels, or C.O.W.S. as they are called. In the PICU, the herd is twice the size as on the BMT unit, because it contains the ICU team PLUS the BMT team, so one might even call it a 'mega-herd.'

Anyhow, I digress. I walked into rounds with a pad and pen handy ready to capture all the important data I needed to see just where Bella's numbers were today. Dr. Tolar wrote back last night with target parameters for Heart Rate, CSA level, Creatinine, & BUN (blood urea nitrogen) I also wanted to catch her WBC, or White Blood Cell count. For review, CSA is the hyper-toxic immunosuppressant she is on, Creatinine and BUN are measures of renal (kidney) function, and WBC measures to see whether (hopefully) Ali's cells have begun to grow inside Bella's, since by transplant day, Bella's own WBC has been decimated to almost nothing.

So, Dr. Tolar mentioned that target parameter for HR or heart rate is around 150, CSA level is 250, Creatinine is 2x her baseline (which at admission was .29, so .58), BUN is under 100. Here were her actual numbers today: (Tolar's plan is first number then the actual is after the forward slash)

HR: 150 / 140-170 overnight
CSA: 250 / 322
Creatinine: .58 / .71
BUN: >100 / 89

So, in these categories, while we are running a little high, we are actually pretty close to our target overall. These numbers all fluctuate and are subject to the influence of myriad different variables related to drug interaction, etc. So, globally, we're pretty close to where Dr. Tolar wants Bella to be.

Ali and mommy redrawing Bella's window as a seascape...

Dr. Wagner dropped by today as well, and when we got into this discussion a little deeper, he went on to explain that with CSA, he is okay with that number reaching 400. He'd rather her kidneys work a little harder for a while, which he called a 'nuisance,' to avoid Graph Versus Host disease, which he called, 'a serious problem."

So, just like with Epidermolysis Bullosa, in BMT, you have to weigh what's the least worst scenario and go with it. We'll take a nuisance over a serious problem any day of the week.

Bottom line in the day's exchanges with the docs was that everybody from both teams knows that I'm on these numbers and will be asking detailed questions daily about them, so they better have good reasons for where things are at on a daily basis going forward. They got the message.

In talking with Dr. Wagner, I realized why I was so mad last night. During rounds, I don't understand the significance of many of the numbers they rattle off, so I watch for the docs responses and read them for a cue. My mantra has been, if they don't flinch, I don't worry. Well, last night, when I asked my nurse whose been working with Bella all week how her kidneys were doing, she flinched. That is what got this whole thing in motion. I had been asking that question throughout the week, and the answer had been progressing from great to fine to okay to a flinch... "Well..." she said as she grimaced a little... that was it.

So, I had 4 docs visit me in the room today plus the social worker to make sure I was content with everything, all of whom individually were checking on Bella and on me to make sure everybody was taken care of. That was nice. I felt heard. By the herd. Sorry, couldn't resist.

What about the WBC you say? I left it out? Noooo, I was just holding off on that so it could have its own space, because Bella's numbers came in yesterday at 300 and today at 800! This is gooood thing on Day +12. The way Dr. Orchard described it was that once she hits 500, they'll watch closely, and if she stays above 500 for 5 days straight, they will say that the first day (today) will be the day where "Engraftment" occurred. In other words, today was the day that Ali's cells established a toe-hold inside Bella.

Now, we're not there yet, mind you, today was only the 1st day, and the WBC is a dynamic number as well, so prepare for ups and downs in that category as well. Nevertheless, the transplant docs (Wagner and Orchard) were VERY HAPPY today with that number at this point of transplant, so if they like it, WE LIKE IT!

Lastly, gotta tell ya that it is a BLESSING that Bella is out right now. Her mouth is producing so much blood that the nurses are suctioning her mouth every hour and finding pools of blood in each cheek pocket. At first, it was mucus, but now, it is almost purely blood. That is a little tough on the eyes when you watch the little tube go into her mouth, then hear the AWEFUL sound the suction makes (think sitting in your dentist chair), then see the little clear tube turn bright red, solid red, and stay that color for the duration of the suctioning. It looks like a transfusion in reverse. I learned to avert my eyes, I just wish I could avert my ears.

Today, I watched an episode of the HBO miniseries "John Adams" with the headphones TURNED UP on my computer to try to drown it out. It helped. Plus, that story has GOT to be one of the great inspiration stories of our history. Not only because of what the man accomplished, but because of the power of the love, respect, and partnership that made his marriage to Abigail Adams stuff of legends. I find it extremely romantic and inspiring. I feel honored to have such a woman as my wife. We essentially met over email, so I fell in love with my wife first through her correspondences. And to this day, after I write a blog (or a book), I hold my breath as she reads it, hoping it meets her discerning eye's approval. My dad was a writer and an editor, so I have his DNA pouring through my fingers as I pound away at my computer, but my writing is always informed by the thought that Angelique will be reading it, so it needs to be GREAT.

"Two hearts, beating on just one... computer screen!"

Last but not least, as our fellow EB trooper Daylon lies on a ventilator just two doors down, the nurses frequently cover for each other on a break, so they will periodically put the other patient's heart rate on their monitor to help keep tabs. Well, they have both been on each others screen for a little over a day now, and we all think it's really cute. Brian and I were joking around that it was like a race and at the time of this snapshot, Bella was winning the race for the fastest heart rate. The nurses thought we should be cheering for the inverse, so Daylon was winning the race for the lowest heart rate in that case.

After weeks and weeks in the hospital, little things like this keep you laughing along the way. And when you have the two families essentially going through this study together, it's hard not to blur the lines of Hippa along the way. To the staff's defense, it's usually the parents who initiate the conversation about both kids to staff, not the other way around. In other words, no nurse comes in and starts talking about what kind of day Daylon is having. Jennifer and I both have an active blog, so we all know how both kids are doing. Staff doesn't need to worry whether they are leaking the info... WE ARE!

Okay, so, all's well that ends well for the day. Thank you for your ongoing prayers and encouragement. You keep our tanks filled. God bless YOU.

Good night.


  1. hooray!
    i will sleep well tonight!
    (did Ali get her package, by the way?just want to be sure, cause I have plenty more!)

  2. So glad you guys are there together. I read every day to see how Bella & Daylon are doing. :)

  3. It was a busy day for me (moving my 84 yr old grandmother and 92 yr old grandfather, more to be done tomorrow and for the days to come)and now that my house is clean and the dishwasher is running at midnight, I finally caught a moment to check updates on these sweet babies.
    I am so glad to hear you were able to get "better in the loop."
    I remember how frustrated I would be when the NICU made choices for us when I was not there. One day I had a similar meeting. I had to remind them who the parent was a couple of times. I know they get busy, but it is important for parents to be seen as advocates and be in the loop. Good job Dad! :o)
    Keep up the good work.

  4. Good to hear such good news! Today WILL be the day of "Engraftment".
    Can´t they do anything to prevent sores and lesions on her mouth? I can't even imagine how you much fell when they do the cleaning procedure...

    Hang in there!

    Carla and Matilde

  5. It sounds like she is doing awesome! I hope that her WBC keeps up and you will soon be celebrating today as Engraftment Day! :)

    That is so cute about Daylon and Bella sharing a monitor ... It must be a HUGE relief to have someone in the same boat, right there with you.

  6. So I didn't get a chance to proofread last night...hahahaha...since I feel asleep. But July 12 was actually Day +10, not 12.


  7. The picture of the two kids heart beats was too funny! I actually laughed out loud! We're glad to be here with you!...oh, by the way, I'm pretty sure Daylon and Bella are boyfriend and girlfriend now. Or so, that's what the nurses tell me. They always ask after his "girlfriend" so I hope Bella doesn't mind the title! :)

  8. My name is Rob Hendrickson. My wife, Kristin, and I have a daughter, Lizzy, born May 12, 2009 (due date was the 29th, right around Bella's date) who has EB Simplex. Brett Kopelan and I went to the same high school in New Jersey (small world, isn't it). We all (Kristin, 3 year-old Katie, Lizzy and I) just want you all to know how much we support you and are rooting for Bella. Good luck and let's keep seeing those good numbers!

  9. Jack and Molly's NanaJuly 13, 2010 at 6:14 PM

    Woo-hoo! So glad things are looking up; I hope I can stay awake long enough tonight to check the latest figures before I nod off. Today, you gave ME a cup of water (you see, it goes both ways), and I really appreciate it; thanks so much!

  10. Hi Ali and Family! We are praying and fasting for Bella's quick recovery constantly! We pray that the angels protect her and that God keep your family as tight in his arms as possible. I've been checking in daily and following your blog- love the great news!!! Please know Bella, that you are thought of often and in our thoughts daily. We love you!!! We can't wait for you to meet Christian's new baby sister- Brooklyn- I bet you two will be BEST friends @ Grandma Joan's :)
    Ps...Christian sends big HUGS to Ali!
    with love,
    Nicole (Christian's Mommy from Grandma Joan's)