Sunday, August 22, 2010

August 22: Day +51

Mommy giving Bella her evening aquaphor massage...

A good day... (yay!)

I walked in this morning and found out that we were off norepinephrine since 10pm last night. Then, I looked up at her blood pressure, and it was STRONG. Man, that was great to see. We've been on that stuff for a long time now, and it was nice to get rid of another medication! Then, I looked at her heart rate. 103. This got me thinking. Esmolol was running at 200 (don't worry about what unit of measurement), up from 175 last night. Normally, Bella's resting heart rate is 110-115. We are trying to get her HR down into the 80's-90's, but low 100's is an improvement.

Then, for some reason, I had another thought.

I asked Bella's nurse, Lori, to pull up Bella's HR over the past 7 days on a graph on the computer. Bella's HR has been spiking into the 180's which has not been helping with her heart condition (hypertrophy - or swelling of her left ventricle wall). Sure enough, as soon as we started esmolol, the spikes disappeared. Her heart rate had stayed nicely within a 10 beat per minute range for 3 days straight. Now that we were weaning the hyrocortisone, and D/C'd the norepi, the esmolol could finally do a little of what they hoped. So, While it didn't get her HR to where they hoped, it stopped it from going where they didn't want to go. Being the visual kinesthetic learner that I am, when I saw that graph, everything changed for me.

At that point, I did an usual thing for me. I changed my mind. LOL.

I realized that the esmolol was indeed working for Bella, now that it had room to. I am grateful to God for boosting her BP along with the right dose of vasopressin. They are using the vasopressin and esmolol like a compressor in the sound world to keep her heart rate in a manageable range. They have "dialed in" her meds and reached an equilibrium where we can pull off her excess fluid, and wean her vent while not working her heart a single beat more than necessary.

We had a good pow-wow in rounds and everyone (including me) was on the same page for a plan for the day. We restarted J-tube feeds, weaned her ventilator a little, and started to pull of extra fluid every hour with Prisma to make up for a few days in a row of too much fluid (mostly from two circuit changes in three days).

Dr. Tolar, Nurse Lori, and Bella...

When Dr. Tolar came in to see Bella after rounds, I told him I had changed my mind about the esmolol, and finally come around. He said he felt the same way. He reminded me just how complicated Bella's case is, and how her problems have evolved so much these past two months. Everyone involved has had to become really flexible in trying new things with her to try to get the best result given the amazing set of parallel issues occurring.

I didn't feel like such a schmuck after that. :)

I laughed to myself this morning after I changed my mind. I thought, "What will I say on the blog? I was so gung-ho yesterday!" The funny thing was, I really knew I wouldn't lose face at all. We are in uncharted waters, and I have been praying daily for trust. Well, it finally arrived. I ride the docs and nursing staff extremely hard, and I need to be willing to bend as much as the next person, if it's in Bella's best interest. Just like when they wanted to put in a new catheter and I was against it, but realized we had to... now the new one works like A DREAM and we are all so much better for it. It allows everyone involved in Bella's care to "do" more of her care without threat of her dialysis circuit crashing every time you change a diaper even!

I'm pretty sure that at one point when I was young, my dad showed me a picture of our family coat-of-arms, and it had a latin inscription that meant, "Trust, BUT VERIFY."* That is the harmonious middle ground I felt like I reached today!

* = I am too impulsive to cross reference the above statement with my brother Paul, who is our family historian, so I may have to edit this upon further clarification

Anyhow, bottom line is that Bella is off one more drug, (slowly) weaning off steroids, weaning off the vent (a little), and is currently in a good place with all her vitals. WE'LL TAKE IT!

In other news...

We hit Mall of America today! Not to shop, mind you... MOA is all about the Underwater World aquarium and Nickelodeon Theme Park in the middle of the mall! Those two will rip a whole in your pocket, but it's fun to do every once in a great while. They added a butterfly exhibit there as well, so Ali got to go to two butterfly exhibits in two days at two different fun places! The kid is definitely maxing out the fun every weekend, and rightfully so. Enjoy some various pictures. Thanks for all your love and support. Good night.


  1. Praise God for each and every moment-that's what I keep telling myself! Your faith and strength is enduring and encouraging. Glad you all had a date with Ali. God bless...

  2. I'm glad it was a good day. You guys needed that. Here's to many more....
    Thanks, Ali, for your spunk. I love seeing those pictures!

  3. Jack and Molly's NanaAugust 22, 2010 at 9:42 PM

    Communication - it's a good thing. What a wonderful way to spend your day - with great news about Bella and a fun time with Ali. What more could we ask?
    Oh, and don't be beating yourself up, Tim, over questioning the doctors. Like you, they're in uncharted waters, and probably appreciate your detailed input. After all, you've been dealing with Bella's condition all her life; they've known her just a short time. Instead...just reach around and pat yourself on the back; you definitely deserve it!

  4. Paul, Heike and Liesel RinggoldAugust 22, 2010 at 9:51 PM

    We cannot imagine as new parents the challenges you face daily. We are proud of you and love you.
    Maybe we should update the coat of arms to,"Diligence, Faith and Perserverence". Your actions and dedication to your family exemplifies this. All the BEST!

  5. YAY!! Go Bella! I'm so glad we got some good news today. Bella is so strong. She inspires me every day. Lots of prayers for more improvement and good news tomorrow. Stay strong.

    Take Care,
    Amber McLaughlin,CA

  6. I have followed your blog for some time and my thoughts go out to you, I honor your brave and loving work for your wonderful daughter. As an adult Cardiologist I felt tempted to give you some arguments for the rationale of a beta blocker, esmolol, in LV hypertrophy. But then today, I see that you have come around by your own, through your observations. I put great trust in that medication. You could try to put it like this: While rapid heart rate in combination with LV hypertrophy will allow the heart to pump only small squirts of blood with every heartbeat, this will not suffice to build up a sound blood pressure level. However, a beta blocker will let the heart muscle relax and fill properly and give a full healthy heartbeat. Physiologically the lower heart rate will prolong diastole, and diastole is when the filling of the ventricle takes place. The longer diastole, the larger the blood volume with every heartbeat. So, finally it is working. Also,there is evidence that beta blockers actually are lifesaving in LV hypertrophy. In adults you will usually give other families of drugs also, ACE inhibitors and calcium blockers, for hypertrophy. I am not sure if this is used in children. I just want to prepare you that there are a number of drugs that you usually propose, and for a good reason. I must admit that I have been wondering why Bella's BP has been so unstable during the last weeks and like your doctors, I have pondered infections and the like, plus the balance btw volume overload vs dehydration. It seems we have a very plausible explanation now. The association btw steroids and LVH was new to me and I think it is so neat how one of your readers in Italy found it. Based upon those papers it should be reversible now that steroids are weaned. All the best to you and have faith in the beta blocker! Great life saver with few side effects.

  7. I'm so happy for Bella's vitals right now. Praise God! I'll keep the prayers coming. Laura V. Germany

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  10. Happy for a good day - praying for many, many, many more good days for all 4 of you!

  11. So good to read you today! What wonderful news!
    And changing your mind just confirms how balanced and rational you are! You are doing a fantastic job. Never question that!

    Continuing praying for sweet Bella and you all.

    Carla, from Portugal

  12. Big hugs and Big prayers.
    Michael and Robin Setto

  13. This is my first visit to your site. God bless you and your family. And prayers for that precious baby girl!

  14. Lynne, Bob, Jack and BenAugust 23, 2010 at 6:30 PM

    Tim -- Thanks for this blog, for giving us our Bella update fix everyday, for your faith, your trust and your humility. In the midst of these challenges, you give all us who are following the story so much, every day. We continue to be inspired by not just your strength, but also your love and generosity.

  15. Glad things are improving for Bella! Ali looks like she's having a great time at the Mall of America! My kids love that place. They want to go there every chance they get! Hope to see you over on 5D soon!

  16. Aahhh, the puzzle is slowly coming together. Wonderful news, Tim! Thank you again for sharing Bella's story, I am inspired every time I read your words. Bella is such a fighter, just like her Dad! Blessings to you all, and especially Miss Bella, beautiful baby girl, who will be well!