Tuesday, August 24, 2010

August 24: Day +53



Ali rocking mommy's reading glasses...

And the roller coaster continues!

Wow, what a day. This morning, Bella's pressures were in the toilet again (like 41 over 21 at one point), and they infused her 5 TIMES (2 saline boluses, 2 red blood cell packs, and one platelet pack) over night to try to boost her blood pressure. Think that's enough fluid? Bella is leaking fluid out of her blood vessels out into her tissues faster than they can infuse it. No one knows why. Normally, this can be a BMT issue, but is usually healed by day +30. Anyway, her heart rate also climbed up to 130. So, now the only positive effect of the esmolol had disappeared, and her pressures were 40's-60's over 20'-s to 30's no matter what they tried. They just couldn't get it back.

The plan in rounds was to get another echocardiogram tomorrow, but they moved it up to this afternoon. I have still not met with a cardiologist at this point, and when the nurse found this out, she was incredulous, so she ordered a consultation for me. So, the ultrasound tech came in and did the ultrasound, and a little while later, Dr. Pyles came in right as the attending ICU fellow was in the room. Perfect. Dr. Pyles said the obstruction was gone! The hypertrophy was still there, but when Bella's heart pumped, there was no "gradient" - no obstruction to the blood flow. He said to cut the esmolol dose IN HALF. The words were barely out of his mouth before our nurse was already changing the dose on the med pump!

Esmolol has been a controversial call, and while we had one day on it that looked okay, we've had two subsequent days on it in the toilet. When her pressures were fine, I was okay with it, but she couldn't hold it up and to be leaky with low blood pressure, it's not the best choice, especially when it was no longer holding her heart rate down. It has been debated in offices, in Bella's room, and I was told even at the lunch table in the physician's lounge today as to whether it was the right call. Hey, whatever the right call may be, the obstruction is gone, and it's wrecking her BP, so we are phasing it out as rapidly as possible. After an hour or so, Dr. Pyles had the echo team come back and do a quick scan while she was on the half dose to see if the obstruction returned. He stood across the room and directed the procedure himself, and sure enough, it was still gone, so he halved the dose again! So, now we are at 1/4 the dose we were two hours earlier, and you'll never guess...

... her blood pressure returned! Go, Dr. Pyles!

The BMT fellow came in to see me and she asked, "In your own words, how would you describe the past two weeks for Bella?" Well, I broke it down for her. I explained that we just spent 9 days chasing this heart murmur around and around with 3 echos, a cardiac MRI, a chest CT, and two new medications, when two weeks ago, we were two days away from extubation when Bella got an infection. While I appreciate all the due diligence, I still felt like we were running around in a circle/painting ourselves into a corner, whatever phrase you want to put on the whole thing. She smiled. Her response was, "Well, we feel that since Bella has gone on esmolol, she hasn't been happy, and we haven't been happy, so we're gonna get her off it." If only I could speak that concisely.

Now, you know I've turned myself inside and out like a yogi to get behind this drug. It was no easy sell for me. I was only too happy to hear that it was going away. I had no problem hearing that, believe me, despite the work I did convincing myself it was the right drug at the moment. Hey, if the obstruction was still present, things might be a whole lot different, but as long as "it" is gone, get the esmolol outta here! To be fair, I choose to thank the esmolol for whatever role it played in clearing the obstruction, and now it is time for it to be on its way.

We also had surgery come in today to re-suture Bella's hickman to her shoulder. Both sutures had been pulled out of her skin during recent circuit changes, and there is now a deep pothole in her shoulder where skin used to be. There are two teams that touch that line, nursing and dialysis, so I will be putting them both on notice tomorrow explaining that they pulled out not one, but two stitches out of Bella's shoulder, and that they need to be more careful going forward when they take her on and off her circuit.

It was a long day, but in the end, Bella is stable again, and we all feel like we've put this heart fiasco past us. we will get another echo tomorrow to see what her heart looks like on the 1/4 dose of esmolol. Please pray that it looks the same and that we can D/C it for good tomorrow.

Meanwhile, enjoy the Ali show... Good night.


Ali starring in "The Little Mermaid," again...


Ali telling jokes to Bella's nurse...


Ali posing with the therapy dogs at RMH...

18 comments:

  1. Whew!

    Glad for this update. Bellas been on my mind all day....

    Um....does the first dog have a clip in it's hair?!

    Goodnight,friends....

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  2. Jack and Molly's NanaAugust 24, 2010 at 11:04 PM

    Sounds like you're on the right track there. I'm praying for a good night for ALL of you and an even better day tomorrow. And I don't know if you had a new nurse today or if she's been on Bella's case for a while, but she seems to know what she's doing - asking the right questions and getting right to the task at hand. She gets the Nana Janet pat-on-the-back award for today!
    Go, team!

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  3. Thank you Lord for a great update today! Please continue to protect and watch over Bella!

    Great pictures...Ang & Ali look beautiful!!

    Good night...praying non stop over here!
    nicole

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  4. I'm smiling by the end of your post! Glad things are getting turned back around! Hopefully we'll see you guys in 5D soon! Woo-hoo! Daylon's been waiting! ;)

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  5. I am so glad to hear things are looking up.

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  6. Dear Bella,

    You're all heart - strong enough to fight off the latest "issue" and compassionate enough to give your parents & team a whew moment. That a girl! Can't wait for the coming home from the hospital party! Go Bella, Go!!

    Love,
    Aunt Mary

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  7. SO glad to read this today!! I hope that all this heart stuff is behind you for good and that the focus goes back to getting off the vent. Hope you have another good day!

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  8. Hope things are on an upward trend that will continue. Love the pics of Ali with the dogs...animal time is always a good thing!

    Praying for a good day for all!

    Susan
    A friend in NC

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  9. Keeping up the prayers for beautiful Bella. Hopefully the heart issue will be gone and Bella can continue to improve and get the He** out of ICU.
    Take care guys. God Bless!!! Love Leah's Nana

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  10. So happy to hear that the day ended on an up note...woohoo! Still praying hard...bp stays up, heart rate is healthy...let's get off that vent (!) Blessings, hang in there Bella, beautiful baby girl, who will be well!!

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  11. hi there! i have been following your journey since you started transplant and i must say you are so inspirational and so is bella! i read everyday and look forward to following bella's story everday! your family is always on my mind and in my prayers! go bella go! all that being said - please, please, please tell me what kind of dog is in the first picture with ali? i am in love! :-)

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  12. What a relief! I see all our prayers are making a difference, so will keep it up!

    It was so good meeting you, Tim and little Ali. Now through this blog we can get to know more about Bella and her mom and your family's situation. What a privilege!

    Reading Psalm 18: 16-36 today spoke to me about your struggle. It is my prayer for your family.

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  13. What a roller coaster; what a relief; what a testimony to the power of love and prayer; what a strong little girl! Once again, Bella comes through! Keep on keeping on, Bella!
    Love, Nanny

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  14. Yes, that is a clip in the dog's hair! The breed is Briard. He was huge but super sweet and gentle.

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  15. Praying for Bella's continued improvement and for y'all.

    A momma in tx

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  16. Giving God all the glory! So glad to hear Bella's setbacks are improving. Looking forward to tonight's post. Praying for a day of rest and healing.
    xxoo,
    Davidson's

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  17. Glad to hear some stuff is improving for Bella and you! We will of course continue to pray for miss Bella to heal, and add of dose of strength for you! You are so much stronger than you give yourself credit for. You have handled this whole situation from day one like no one ever could. You are an amazing Daddy and Hubby... stay strong friend. We love you and are with you in spirit out there in that ocean.
    Love,
    The Vanderbooms

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  18. Still praying hard for Beautiful Bella and all of you. Glad to see things are going alittle better for Little Bella. You are amazing parents. What a journey. Love and blessings. Hang in there. God is watching over all of you.

    Love;
    Myrna & Dwight CA

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