Friday, July 16, 2010

July 16: Day +14

This is almost the EXACT same picture Jennifer posted on her blog tonight...

Holy cow. Parallel lives.

Daylon AND Bella began kidney dialysis today, within about an hour of each other. It is truly amazing how connected we have become. We discussed with the Edlings the idea of even choosing a local BMT in southern California together to improve outcomes for us. If anyone has any knowledge of the BMT doc circuit in Orange, LA, San Diego, or Riverside Counties, please comment with referrals or recommendations. We'd appreciate any leads.

What an intense day. Let's start with the numbers: Creatinine, BUN, and bilirubin are all marching north again.

Creatinine was up to .93 (last 4 were .71, .68, .69, .79) target is .58
BUN was 75. That's okay. Anything under 100 and we're not thinking about it.
Bilirubin was up to 1.6 (mon: .5, Thu: 1.1)

So liver and kidney functions are slowing to a halt. Bella was +1,400 mL of fluid over the past 48 hours, and she's hardly peeing at all despite being on the max dose of an intense diuretic. Folks, that's 3/4 of a 2 liter bottle, and as Angelique said, "She looks it!" She's gained close to 2 pounds in 2 days, and she's not on any oral feeds. That's a 10% increase in weight in 48 hours.

It would be like me adding 17 pounds in two days while on a liquid diet. Not the best for your body.

So, as Bella swelled up like a grape, the attending doc (fippant comment gal) at least was on top of it to get Bella on dialysis TODAY to help pull of some of that fluid.

Let me give you an analogy of how dialysis is helping Bella and Daylon. Their bodies have fluid in their blood, in the cells throughout their body, and in the abdominal cavity as well. the concept behind the dialysis machine is that it turns your blood into a sponge. Ever notice that if your sponge is dryer than a spill, it soaks the spill up, pulling the liquid from the spill into the sponge? Then, you got to the sink, squeeze the spill out of the sponge, then keep soaking up the spill with your newly emptied sponge? Well, imagine that the blood is the sponge and the dialysis machine is the squeezer. When the machine pulls the fluid out of the blood, it then circulates the blood back through the body. When the blood returns through the body, it is a fraction "dryer" than the cells around it, so it pulls fluid in like a sponge off the neighboring cells. Remember biology class? Water always flows from a higher gradient (percentage of water) to a lower gradient. Then, the blood is pulled out through the hickman line and squeezed again by the dialysis machine, thus squeezing out the sponge for another pass at the spill. Now, when the blood re-enters the body, again it's a bit dryer, o it keeps pulling extra fluid with it.Do this continually over the course of a few hours, and you can squeeze off, relatively safely, hundreds of mLs of liquid from the body. The machine is doing the kidney's job for them. So, the machine is emptying that 2 liter bottle a little at a time.

So, the catch to dialysis is that as you dry the blood out, the blood pressure will drop since there is not as much volume passing through the veins. So, you have to watch how fast you squeeze that sponge, otherwise you drop the pressure of the blood moving through the pipes, and this can cause a host of problems. It's a bit of a tightrope walk.

The good news? Bella's counts JUMPED through the roof today!

WBC 5,600! (7/12=800, 7/13=1,100, 7/14=1,400, 7/15=2,200 7/16=5,600!!!
ANC 4,300! (7/14-1,000, 7/15=1,400, 7/16=4,300!)

So, from a transplant point of view, we're doing great! Now, we just need Bella's liver and kidneys to survive without any permanent damage, otherwise those transplant numbers are merely academic.

Dr. Wagner dropped by to check in on Daylon and Bella since we're both in the thick of it, and said overall he wasn't worried with where they are at. Easy for him to say. However, I'm glad to hear his take on the whole issue, because he really is looking at the whole case, and not too worried yet that we're into anything we can't get out of. He is not yet convinced that she has V.O.D. and said bilirubin numbers can get SKY HIGH (like in the 20's) in some cases without any long term effects. I'd rather not see the day, personally. Yet again, he knows more about any of this than any of us, and if he's not worried, I can ratchet my worry down a little I suppose.

We all finished the long day at Punch Pizza for salad, yummy pizza, and a well deserved beer!

Tomorrow, wound care day, and if we hit 2 on bilirubin, we start defibrotide. We may have to get a second Hickman Line put in IN ADDITION to the one put in yesterday so dialysis can run 24/7. It runs for 4-5 hours and during those times, no other meds can run (for the most part) so it wreaks havoc on an already complicated and busy med schedule since dialysis hogs BOTH ports (blood in, blood out) in the Hickman. Further talks on this will ensue tomorrow for sure.

Thanks for all your comments, and keep 'em coming. They help us minute by minute. I really love it when you send your actual prayers our intentions, particularly your prayers. As I read them to myself, I feel their power and intention wash over me, and a sense of release of pressure and tension actually cascades down my body. It is a physical reaction that I can only compare with shaking off a shiver, but in a good way. Aw I read your words, I can let go, and let God take over in that minute, and what a relief that is. I love to try to yank the wheel back from God any chance I get, so in those moments, I am giving it back over, and that is a welcome feeling of serenity that my mind, my body, and my spirit desperately need. Thanks.

Let's leave it there for today. May your day be blessed today.

Fabulous socks of the day!


  1. You might find this information useful

    Gabriella Vega

    this is a little girl from Arizona had a heart transplant at Loma Linda in California and mentioned BMT

  2. Whew hew on the numbers...huge up-swing...we'll take it!!!
    Hi Bella! Just want to let you know that I think about you constantly throughout the day...sitting in traffic, working (visiting doctors offices/hospitals/nursing facilities...I call on them all day long). When I think about you, I also am in constant prayer with the Lord, asking that he guide the doctors/nurses, give them strength and knowledge to care for you with sharp minds and great hearts. May the Lord put a double guard of angels around you and Daylon...I can't wait to check back in with you tomorrow! ps...You are such a dolly with your socks...sweet dreams!
    we love you,
    nicole baca

  3. I work mainly with Internal Medicine- I will ask around for any BMT recommendations and let you know asap!

  4. Well, I am following both children and their difficult journies...I am also sending up my prayers to the good lord as well. I think of you all often and wanted you to know.
    They go a little something like this. Father thank you for another day and the blessings you bestow upon my family.
    Father I have some pretty heavy prayer requests tonight and they are for 4 special little babies needing your help. All 4 have EB and all 4 have a similar yet different set of troubles father. We have Jonah who needs to start eating father he has been pretty stable as of late...
    Jonah's mom led me to Tripp, Anabella, and Daylon. Father Tripp needs some relief please help to heal his eyes quickly and help him to heal the wounds he is struggling with.
    Father Anabella and Daylon really need you as these two babies have it pretty tough right now. Please guide the medical staff caring for them to do the right things that are needed and to STOP doing the wrong things that are causing more problems. Father I get so upset to hear how these two babies have been injured by staff that think they know everything, father remind them they do not.
    Father I am asking for you to lay healing hands on these two babies...please father help them to recover, they need for their bad numbers to come down and their good numbers to keep climbing, they need for their livers and kidneys to get back into the game, they need for the fluid to just go back to what it should be so the need for dialysis ends, father they need for the mucositis to resolve so these babies can be weaned from the ventilators and oxygen.
    I pray father for their recovery.
    Father I am also praying for their families to remain healthy, strong, and vigilant...please father take care of the families to.
    Father I pray for cures for the sick children of the world...I pray for a cure to EB, cancer, and the many other deadly diseases.
    In Jesus's name I pray...Amen

  5. Dawn and friends in Canberra, Australia continue to pray for Bella ,Daylon and families.Sheila,there you are sweet blossom! Miss youxo

  6. Praying for you in Baltimore, Maryland.

    On an unrelated note, I just read on another blog that if you follow Punch Pizza on Twitter (@PunchPizza), you'll hear about special promotions and deals. Didn't think it was relevant as we don't have any out here, but maybe it will help you!

  7. Gracie and I just held hands and prayed for baby Bellas kidneys and liver to recover and her quick return to stable health. We thanked God for giving her an outstanding WBC count and for giving Bella's mommy and daddy the strength they need to get through this. We too have faith that one day this will be a distant memory. Sending our love from Tampa... the Ostermann's

  8. I pray that Bella and Daylon will both have better kidney and liver numbers soon as they will both turn the corner to better QUICK! They sure are a duo, aren't they.

  9. Bella and Daylon's nurse back home is praying for them!! I wish there was some way I could help more... and we do have BMT at CHOC!

  10. Tonight when I say my prayers to God in my head, as I lay in bed looking up to heaven, I will pray again as I always do (and my heart crys this out during the day too) that your precious baby Bella and sweet, little Daylon will get better soon. That God will protect them and keep them safe. And that God's will will keep them here with us on earth to live happy and healthy lives.

  11. Very uplifting post today. I pray for more of them to come!

  12. It's 1:47 a.m. I got up realizing I did not check on Bella and Daylon after I got home from being gone to youth conference for several days.
    You are in my prayers and in my thoughts.