Monday, July 26, 2010

July 26: Day +24

Well, tonight is a change; I am posting from the room because we are having some Prisma issues, and I don't really want to leave.

Anyway, Monday morning rounds began with a new resident and a new attending ICU doc. Luckily, Dr. Verneris and Christina, the BMT fellow, were present, so I felt like we had a couple of heads in the circle who could offer context and perspective on Bella. It was more like the three of us bringing the two of them up to speed on Bella.

Here are the numbers:

Weight: still no weight, though tonight we think we figured out what was causing the crib to report false weights, so when things slow down, we'll try again and see if we solved the great weight caper.
I/O: -244. YAY! Even better than yesterday! We finally hit our goal of -240 or greater.
Creatinine: .40 = GREAT
WBC: 5.4 = slight drop from 5.7, but no biggie
Hemoglobin: 11.5 = Good
Platelets: 26 am / 26 pm = we now check 2x a day to stay on top of this. 20-30 is good, but anything less than 30 and we give Bella more platelets, so she got platelets twice today. Okay with that. Adequate platelet counts help prevent any bleeding from defibrotide.
ANC: 3.7 = YAY! Up from 3.4 yesterday
Bilirubin: 2.4 = YAY! down from 2.6 yesterday
CSA: 532 = BAAAAAD. We took another reading this morning and it came back 726 and that's when we officially knew that someone is not doing something right. We drew 2 more labs at 3pm, one from Bella's PICC line, and one from the Prisma machine to see if somehow the PICC line was contaminated, and we got 368 from the Prisma and 297 from the PICC line so WHO KNOWS WHAT THE HECK IS GOING ON... NOBODY HERE SEEMS TO. Turns out, people were making a simple mistake when drawing her blood to get this number. Simple, like make sure to clamp the second line before you draw from the first one.

That's it.

Seriously, you would be amazed. I think we live in an "ivory tower" fantasy about health care in this country. Remember when the Walter Reed scandal came out? I remember thinking, "Mildew runing down the walls of the patient's rooms? WHAT? That just CAN'T HAPPEN IN AMERICA!" Well, I remember when one of the orthopedic surgeons operated on the wrong leg of a patient a few years back at my local hospital. Last time I had knee surgery, I was given a sharpie in the pre-op and was told to DRAW AN ARROW on the thigh pointing to the knee that the doc was supposed to operate on. Why was I the one determining this? Because the doc at my local hospital apparently wasn't the only one operating on the wrong leg.

I spew all this because I have to remind myself, and everyone reading this that we "practice" "health" (sick) care and patient care. And yet, the reality is also that from 2006-2008, just under 100,000 Americans died in American hospitals from direct patient care errors, according to the 2010 HealthGrades Patient Safety in American Hospitals Study. I remember learning about this during my own hospital orientation. That's a sobering number, folks. So, when nursing staff get flustered because there is a lot to do, it bugs me, because I know mistakes are made when people get flustered.

CSA is an incredibly toxic substance, and I don't need people pumping unnecessary amounts of this drug into Bella for no good reason. This is the second time CSA levels have gotten weird, and when you're kid is already so sick and is listed as in critical condition, the buffer is ZERO in my book.

Alright, alright, that's enough. Thanks for listening.

We did rounds, dressing changes, had a liver ultrasound, had an echocardiogram (like a heart ultrasound), stopped and restarted Prisma, all before 2pm! The afternoon was nice and quiet, but things have been busy since 7. It's now almost 11 and things are starting to smooth out. As soon as I finish up with you all ( ;-) ) I will head home. The liver ultrasound came back the same as last week which means the V.O.D. has not spread at all! Combined with bilirubin numbers leveling out right now, these are really good signs for Bella.

We ran into Dr. Wagner tonight as well, and he also said that he is confident that Bella will make a full recovery from all of this. He said, "We're gonna get you back over [to 5D the BMT Unit]!" So, again, if Dr.s Tolar, Somani, and Wagner all feel good about Bella, I guess we should, too. Still, there is a strong feeling inside me to remain VIGILANT. Why? Because they assume that no errors or mistakes will be made along the way to her getting back. I feel like that's where I come in. I feel like the Quality Control Manager around here; like it's my job to make sure people are bringing their "A-Game" into Bella's room. Coach Tim, at Bella's service!

One other thing we are seeing is an adrenal gland insufficiency which is why we had to go on steroids and dopamine. Dr. Wagner wonders if it isn't an EB thing. More research.. wait, ANY research is needed on this as this might be a very important piece of every EB kid's makeup wherever they are. It may explain why EB kids are so small, as opposed to the GI absorption insufficiency theory that is kind of held as gospel right now. If RDEB only affects mouth, upper GI, and peri-anal, why would absorption issues be to blame, particularly if the child has a G-tube? So, more will be revealed on this front. Stay tuned.

Thank you to those of you who promised to contact your local RMH today. Did you follow through? How 'bout the rest of you out there?

What one new action will YOU do to


There are people in your community who need your help. Please answer the call.

Thank you.

Good night.


  1. Hoping you can get a moments rest.

  2. Woo-hoo! First to comment! I'm glad things are going so well for Bella! My jaw dropped when I read her blood result numbers!! Way to go Bella! Sorry about the CSA drama. We went through a similar thing last week (remember the A line?) Hope they get things worked out. I'm spending too much time in the room! I miss our family chats! When we're back at the RMH we need to go on a family outing with you guys! Sending you tons of prayers and love from two doors down (and up a floor and one over @RMH)! Love, The Edlings PS- Thanks for your last comment. I needed that.

  3. By the time it posted I was second. Just need to clearify...I can count. Promise ! :)

  4. I'm so glad to hear Bella is doing so well. Woo Hoo! Our prayers are working. I will keep them coming! Stay Strong!

    Take Care,

    Amber McLaughlin, CA

  5. Yay for great news!!! Thank you for keeping us posted :) Sleep with the angels! Thank you Lord for your love, grace and mercy. Please continue to watch over Bella tonight and please touch upon each nurse/doc/resident/staff- keep them kind @ heart and sharp in mind.
    Praying for you Bella!!

  6. Is it bad that i checked on Bella during a mommy's night out with my girlfriends? Nope. They are praying, too, so they understood completely. Love those good numbers! Yay, Bella! You Can be coach and manager, all of us are the cheerleaders.
    Love from home...prayers too!

  7. Jack and Molly's NanaJuly 26, 2010 at 11:12 PM

    It must be very encouraging to hear such positive remarks from Bella's doctors! I'm so glad you had the "A" team with you when you met the new crew today; having a united front is a good thing.
    Praying for more positve results tomorrow. Enjoy your sips of water, and get ready for the next inning. Go, Bella!

  8. Way to go, Coach! Blow that whistle, yell if you have to, and don't hesitate to bench players who aren't in the game!

    Loving, supporting, and continuing to pray for Bella and her amazing family.

    A friend in NC

  9. I so happy to see lots of great numbers for Bella and the fact that you get those positive comments from her drs I hope you get some comfort from that. It is so hard to think of both Bella and Daylon as just a little older than my little girl...for some reason they seem bigger (which = older) in their pictures. I look at my Clara and I realize how little they really are. I have "stepped up" in my community by supporting Clara's hospital (what my 4 yo calls it) by getting sleepers, spoons and toys for the patients. I am going to run a 5k to raise awareness for pediatric cancers. I have even writen to The Drs show to suggest as a topic childhood diseases (ones you rarely hear of). Yes I included EB in that list...still havent heard anything from them but keeping hope that they consider doing a show. I will be checking out RMH to see if there is a way we can help (I liked the pop tops simple). As always praying for Bella. If you dont mind...what is it that you do? I believe you are in the medical field...just wondering.

    Denise WI

  10. Love and prayers from Dawn and friends in canberra australia. extra hug for sweet blossom Sheila