Thursday, July 29, 2010

July 29: Day +27

And another chapter of "Groundhog Day Part II" concludes...

SCENE 254: "Run in with Dr. Tolar in the Hospital Lobby"

Jakub: "Hi Tim! How's Bella?"

Tim: "Stable."

Jakub: "That's what I've heard. That's why I haven't been around."

Tim: "And that's why I haven't emailed you!"

[mutual chuckle]

Jakub: "How are YOU?"

Tim: "Tired."

Jakub: "Yeah, you look it."

Tim: "Hey!" (Tim hits him in the shoulder, pretending to give him a hard time.) "Yeah, I know I do. You know you're tired when you look in the mirror and scare yourself!"

[another mutual chuckle and they depart in opposite directions]

[end scene]

Later that day,

Dr. Wagner appears in Bella's room while Tim is finishing changing the dressings on Bella's Hickman and PICC lines...

...okay okay, that's enough. I'm new to screen writing... in fact, that was my first attempt up above. I know, I know, don't quit my day job.... uh, too late.

Forgive the above ramblings, I get bored with myself after writing so much over the past 2 months!


Rounds were relatively uneventful except for the fact of meeting the new attending BMT doc and fellow. They are nice. There are some pretty complex things happening inside Bella right now, and I'll do my best to explain it in laymen's terms, but first...

Here are the numbers:

Weight: No weight yet today (will be done tonight and will have that data in rounds tomorrow)
I/O's: -22 (YAY! We were shooting for a net of zero, so that's pretty close!)
WBC: 7.9 (YAY! almost DOUBLED since Tuesday!)
ANC: 6.2 (YAY! MORE than DOUBLED since Tuesday! Go Ali's cells!)
BILI: 2.4 (still hovering in the <2.5>
CSA: 431 (I give up on CSA. No one seems to have a clue about these levels, the lab is CANCELLING orders in the computer on their own, Bella is on a tiny amount, and it had been lowered even more, and she's still gone up from 297 on Tue to 389 yesterday to 431 today. Again, with her in renal failure already, the LAST THING her kidneys need is too much of an extremely toxic drug hanging around. Goal is 250, max is 400, average over last 10 readings is 436. I put in a "strongly worded email" to Dr.s Tolar and Wagner tonight... hopefully they can get this under wraps by Monday)

Now to the more detailed stuff... wish me luck here.

Bella's blood pressure has been on the low end for over a week now, the result of vaso-dilation, or expanding (more specifically, inflammation) of the blood vessels. In fact, she has been on (now) 2 different vaso-constrictors, or 'pressers' to squeeze her blood vessels to help increase her blood pressure. Dr. Kooy, the attending ICU doc, gave a great analogy tonight to understand what's happening inside Bella:

Picture a garden hose. Turn it on a few turns so the water is flowing, but not gushing. Now, if you made the hose thinner, with that same volume moving through it from the spout, it would SHOOT out the end, like when you have a nozzle and just let out a little at a time. The pressure inside builds. Now, imagine that you made the hose much wider, and sent the same stream of water through it. It would lose its punch when it cam out the end, right? This is how it is with Bella's blood vessels right now. They are inflamed, so they have expanded. Now, that same blood volume she has flowing through her loses it's punch because it has to fill a larger tubing throughout.

The big 64,000 question is...

...why are Bella's vessels inflamed?

We don't have a clear answer. Infection is a common reason for inflammation, but Bella is on great antibiotics, and all her cultures keep coming back negative. They are looking behind and under every rock, and can't seem to find the smoking gun. V.O.D. causes inflammation, and Dr. Kooy felt that it may cause systematic inflammation of all her vessels, rather than just the localized inflammation we have seen in the liver ultrasounds. So, could it be the V.O.D.? Could be. Dr. Stephanski thinks it could just be BMT (chemo) related, but Dr. Wagner thinks if it was BMT related, it would have receded by last week. So, like I said, we don't have a clear answer.

This vasodilation throws a wrench into our dialysis plan to get the remaining 1.5 kgs of fluid off, because dialysis lowers blood pressure as it squeezes the excess fluid out of the blood. the theory again is that as you pull fluid off the blood, it will draw fluid out of the vessel walls, and as they "dry up" a little, they will draw the excess fluid out of the neighboring tissues, or "third space," where the excess fluid is sitting. Once we get that excess fluid off, we can then begin to talk about getting Bella off the ventilator. So, it's kind of a case of dominoes. The V.O.D., or some other cause, is lowering her blood pressure, which makes it harder to take fluid off from dialysis, which delays how fast we get off the vent.

We are now at a rate where we are pulling off all the fluid we put in by the end of the day, but we can't seem to pull off any extra without wreaking havoc on Bella's blood pressure. The body evaporates a certain amount of fluid through the skin naturally every day. This is called your "insensible losses." The docs calculate that Bella is roughly burning about 200 mL a day on her own through insensible losses. To get 1500 mL off at 200 mL a day means we are looking at 7.5 more days on Prisma IF we net zero every day for the next 7.5. Luckily, we have netted a +88mL over the past 7 days, so it is possible. The other piece is that Bella's blood pressure needs to hold its own during that time.

Soooo... we are on two key meds right now to try to 'urge' the body to shift into a more favorable environment. The first is called Norepinephrine. This is a 'vaso-constrictor', or vasopressor that squeezes Bella's blood vessels to try to keep that garden house from getting too wide. In addition, it does so while avoiding s queezing the heart, which had been squeezed a little dry by its predecessor, dopamine. So, we are off 'dopa' and on 'norepi.' The second is hydrocortisone. This is a steroid that has an anti-inflammatory quality to it. The idea with this is to stimulate the adrenal glands to produce more steroids in the body to combat the inflammation internally.

Hopefully, these two drugs used in concert will continue to keep the symptom of vasodilation at bay while we gradually pull off the rest of this fluid.

Well, I have killed my battery again trying to work this post out in as clear a way as I can. Tomorrow, I promise to bring home my plug so I can finish a whole post and get you some much needed pictures!

Pray for no more swelling, no more leaking, and


  1. Praying for you Bella doll...Dear Lord, please continue to watch over Bella, the med staff, Tim, Ang, Ali & family.
    Looking forward to the pictures!!!

  2. sum1lvsu@yahoo.comJuly 30, 2010 at 4:40 AM

    Wow - this website has been different each time I opened it. Finally I got this box. Don't worry God has this under control. He has a plan. We must remember that if we begin to feel 'things are not going the way we like.' All we can do is open our eyes and see beyond the surface of what we are enduring. When we feel 'sorry' --don't! God is there and wants you to feel joyous emotions. He won't give us more than we can take. With that in mind, you could keep up those spirits you expressed in the screenwriting, in fact--I though it was good and that is a real way to enjoy every moment in Bella's temporary home with all those tubes and frequent checks by staff. Keep every moment in your heart for memories at a later time. I have passed the wish for prayer on to many and the prayer wall is growing. God Bless everyone involved. Everyone is doing their best!

  3. Your sweet Bella continues to amaze me - she is one strong fighter. I continue to pray for her, somewhat grateful that she isn't aware of the worst part of this transplant. I'm praying that Ali's cells continue to grow and that Bella's be gone! Cannot wait for that post when you tell us you are moving back to 5D where you will get to hold and cuddle your sweet baby. Praying for all of you caring for Bella.

    Kim M
    Waterford, Michigan

  4. "No more swelling, no more leaking, and ...."

    what a cliffhanger!

    Prayers on their way, for all that you for you and Ang...giggles for Ali, peace, comfort, and good numbers for Bella

  5. Sorry things are so crazy. Hopefully, within the next few days she'll turn around. Good luck with the engraftment blood draw today!We're rootin' for ya Bella! Go Ali cells!

  6. Dear Lord,
    I know you will not mistake my silence,
    For it is prayer and mantra.
    Ceaseless like a river,
    Flowing for Annabella.
    And so it goes,
    "There is a balm, in Gilead..."

    Love to Annabella, Tim, Ali and Ang


  7. Lynne, Bob, Jack and BenJuly 30, 2010 at 4:53 PM

    No more leaking, no more swelling and . . . healing and strength for Bella, good nurses, rest and energy for you and love to everybody.

  8. Hoping today was a good day for Bella and the entire family. Praying for no more swelling, no more leaking, wisdom for the medical team and strength for Bella and her family.

  9. Dear Tim & Ang,
    I just finished reading every post for the month of July. We think of you & Ali & Bella so often and can't imagine enduring the trials you have faced and overcome. These trials tear away pieces of you until you think you have nothing left, but then Bella gives you hope. She has this incredible strength in her that she inherited from both of you (and now some of Ali's enormous strength in her too) and she will pull through this.
    Tonight I am praying Bella will be off the Levo soon and extubated as well. I understand that the daily differences in plans of care and labs and staff are difficult to handle, but keep your sights on the trends and the knowledge that you all are forging the path for protocols and treatment paths to treat this disease. There haven't been enough before you to have your daughter fall into a proven, mistake-proof treatment plan. You are doing all that you can and the best that you can and it is amazing. Hang in there and continue your diligence, but don't forget to take care of yourselves. With less help with Ali, you both will need extra TLC for each other. We wish we could package that up and send it to you. We love you. P.S. Marissa saw a photo of Bella today and stated, "Oh, she is soooo beautiful." She can see her strength shining through the tubes! Love, The McGuires