Friday, August 20, 2010

August 20: Day +49


My brain is full. In another browser, I currently have 4 different tabs on wikipedia open:

Dynamic Outflow Obstruction
Blood Pressure
Adrenal Insufficiency

I've been spending the week trying to wrap my brain around cardiology and how Bella's situation defies all convention. Bella has left ventricle hypertrophy resulting in low blood pressure. Problem is LVH is usually a result of HIGH blood pressure. Today, we went on a drug that is usually given to lower blood pressure. Then, we added another medication that raises blood pressure. This is on top of the two other drugs we are currently on to raise blood pressure.

Sound a little confounding? Now you get a glimpse into why I have a chronic headache. If you ever want to go insane, try to understand an insane person's logic. I feel a little insane trying to understand today's call. The med we gave (esmolol - a beta blocker) was given with the intention of lowering Bella's heart rate down to around 85 bpm. Her resting HR is around 110-115. The thinking was that if they could slow down the heart rate, they would allow the heart to fully close and open and rest in between, thus somehow lowering the progression of her hypertrophy. Fair enough, but after several hours on the drug, it did nothing to lower her heart rate. Frankly, it did little of anything, despite the ever increasing levels they kept giving. Despite this, no one was willing to stop the drug. Now, she has a new drug running that isn't working, and they added a third presser to counteract the side effects of this ineffective drug.

I feel like I'm taking crazy pills.

The one good piece of news was that we at least starting talking about weaning back the hydrocortisone. We have been on a big dose of hydrocortisone (cortisol) for a month now, when the original plan was to use them for 72 hours then wean off them. The attending ICU fellow tonight mentioned that hydrocortisone can lead to hypertrophy.

Okay, in that case, 1) we've been on hydrocortisone since July 21. 2) we have hypertrophy.

Am I missing anything?

Soooo...I asked him when we could start weaning off it. The fear of God came over him and he immediately began hemming and hawing about how long it would take to do it and that we'd have to talk about it and plan it out.

Ok, big deal, start talking and start planning, right? So, I pressed on and asked when could we at least begin the wean? Then, he passed the buck to BMT and said since it's their drug, they have to make the call. Alright, I know who to bug over there in BMT...

Bella is squeezing her hands so tight, she squeezed off her last fingernail on her right hand...

In the meantime, Bella has rapidly spreading petechiae, which is usually from low platelets. Bella's platelets are fine. No one knows why she has petechiae which has gotten worse and worse over the past 48 hours. Also, her right leg is discolored and swollen, and she is now way overhydrated (again) and puffy all over.

I feel like we've painted ourselves into a pharmacological corner by stacking so many drugs on top of each other, especially because Bella flat out looks worse today than yesterday.

It's just so hard to watch her slide so far back from where she was a week ago. Ugh.

In some good news... Daylon transferred back to 5D today!!! YAY, DAYLON! This is good for Daylon and good for Bella since she copies everything he does anyway. We gave her a hard time tonight, telling her that her boyfriend skipped out on her and she better follow him over there to keep an eye on him (He's pretty cute, you know).

My brain needs a rest. Please pray that the docs have the courage tomorrow to begin weaning Bella off steroids. It's time. My gut is YELLING at me about this one at this point, and that is exactly what I told Dr. Tolar. Hopefully tomorrow he will take the reigns and get this process started.

"BEEELLLLLLLLAAAA!!!!" Holy cow, I almost dropped her!

Tomorrow will be a fun day. Rounds aren't till 9, Ali gets to go on a play date with Ellery to the zoo, and mommy and daddy are going on a picnic date to Minnehaha Falls. Don't tell Ali! tee hee. Good night.

Always leave on a high note!


  1. I am scared for you guys, I really am not sure how you hold it together with one thing after another nailing you guys. You are far stronger than I think I would be.
    God bless Bella and her family please father make one one of the doctors see the light and figure out the puzzle Bella has going right now. Let them fix this mess of meds they have going to find the right solution and stop doing harm. Give them the strength needed to carry on, give Bella more strength than she has ever had before. Keep this baby in your arms father carrying her through the worst times of her life.

  2. Ali is adorable! What a gift from God she is to lighten and bring love, joy, and innocence to all that has transpired.

    I am going to pray that the doctor's use their intuition--which seems to be what you alluded to today: less drugs, more time, and more faith!

    My heart is heavy for you all. Praying frequently, and trying to draw on God's hope for you all. One thing I have learned this year is the incredible power of prayer and specific, faith-filled pray, that claims the power of God and blood of Jesus over anything. Keep, keeping on. God is still working!

    Hope you feel rested tonight and tomorrow.
    God bless. May you feel His enveloping arms around you all . . .

  3. Yay Daylon!
    Bella will get there soon...she can't be shown up by a BOY!!!!
    More prayers coming!

  4. Nothing is impossible with God! I believe and I have faith that the Lord will strenghten Bella, shed HIS wisdom over the doctors and staff that care for Bella- do not be discouraged!!! I give thanks to the Lord for Bella each and every day...and I thank HIM in advance for healing Bella and watching over her. Without the Lord, we have no hope, no direction and no protection. HE is with you and Bella...I believe and I will not be discouraged. Please know that I pray and think about Bella throughout each and every day!
    I pray that the Lord sharpen the minds of the medical staff that are caring for Bella...I pray that Bella be protected by the blood of Jesus and may she return to a full recovery!
    Good night...sweet dreams...and yes, TGIF
    nicole baca

    ps...don't be discouraged...our God is an aweseome GOD!

  5. I am the one who recently started praying. Last time was over 20 years ago. I am still praying. I pray for your daughter everyday. While I may not write the eloquent prayers as others write, my prayers move me to tears everytime I pray for your sweet Bella. I believe with all my heart Bella will heal and these will soon be your best "worst" days.

    I check on your blog everyday , sometimes I suppose the point of obsession. You have a remarkable talent in your writing to take us into your world. Your story is priceless.


  6. I wish I could help you all piece this puzzle together. All of the ironies would give me a headache too! It was fun to see you at the movie; you looked momentarily relaxed- hope you didn't mind my girl joining your cuddle time; she's crazy about Ali.

  7. CRAZY BMT LIFE!! If it's not one thing...I loved the note today on Daylon's door! It made me laugh out loud! I'm sorry things are going so rough for Bella. It's easy to feel lost in this whole mess. Just make sure you remember, we're all standing behind you praying. Get better soon, Bella! (there's a big room open next door! Wink, wink!) Love, Jennifer

  8. I have made a quick search and found the following paper:

    Hydrocortisone induced hypertrophic cardiomyopathy
    J. Vimalaa, Atul Prabhua, Sreeja Pavithrana and Raghavan Nair Suresh Kumar


    A preterm infant developed recurrent, hypertrophic obstructive cardiomyopathy (HOCM) on administration of steroids which resolved after discontinuation of the drug. Following a course of hydrocortisone for treatment of broncho-pulmonary dysplasia, echocardiography showed left ventricular hypertrophy with outflow tract obstruction, resolving on stopping the drug, only to recur after a second course.

    This is just one case-study in a preterm neonate but it looks like Bella is on a similar path. You may want to use it in your discussions with the BMT people. I have the full paper in pdf if you are interested. Please just send me your email to and I will send it to you.

    Keep the strengh and faith! We will continue to pray for sweet Bella. She will follow Daylon's steps of the PICU.

    Carla, from Portugal

  9. And another case report:
    (I don´t have access to the full paper of this one.)


  10. last night I had a dream about Bella. In my dream I woke up this morning, and came downstairs to check Bella's blog, and you had just posted some new pictures of Bella. Pictures of Bella back at home with Ali, playing in the living room, and she was giving the camera just the best little smile. I can't wait until the day my dream is a reality, and I have much faith that it will be! Thinking of you all as always -

  11. I am sorry that Bella (and your family) is caught up in the jumbo-mess that dealing with different sectors of medicine can create. We will never give up and will always be behind you, keep pushing the doctors and reminding them that her care is #1!!!

  12. I really don't know how you guys do this everyday. I sure hope that they can get Bella off the steroids. I am NOT a big fan of this drug.
    Extra prayers that the doctors will do what has to be done to make your beautiful Bella get better and follow Daylon to the room next door. Keep the FAITH. Love you guys. Love Leah's Nana

  13. Praying that they begin weaning Bella today. Wow, that is a lot to wrap your head around. You are both doing a great job. Keep following your gut! As a pharmacy student, I fully believe in drug therapy, but THAT is a lot for a little girl and her parents to handle. Your strength amazes me! Have a great day today at Minnehaha, you'll love it, its beautiful! God Bless Bella, and Ali too.

  14. Hope everyone has a great day today! Sent an email to your divineplanet account on the 16th and wanted to be sure you received it.

  15. Sending good thoughts your way. I can't imagine how frustrated and worried you guys are.....hope Bella gets on the healing path soon.

  16. Lord, please flush out all the meds out of Bellas system. Please allow her heart to feel our love and function properly. We understand we have made great accomplishments in medicine, but at the end of the day, you remain in control. I trust that you will give her stength and keep her dad sane! God Bless Bella

  17. Fight Bella, fight! The unknown is what scares us the most... good thing we do know God is in control. Hold on to each other and stay united in this fight. Love, prayers and blessings.