Tuesday, August 3, 2010

August 3: Day +32

"Stable to Slightly Improving..."

...was the prognosis this morning. I actually wrote it down in my notebook since I couldn't believe my ears. The tone of rounds was cautiously optimistic this morning. Bella's ventilator settings have gradually been lowered and she has tolerated the changes well. Her counts were GREAT today... well, let me just...

...get to the numbers first:

Weight: 12.5 (from yesterday) no one got a weight today.
I/O: +691 (ugh. Amazing what happens when you are short staffed and get stuck off dialysis for 9 hours instead of 3)
WBC: 9.7 (AMAZING!)
ANC: 7.7 (YIPPEE!)
BILI: 2.2 (okay, but creeping up since we've been off j-tube feeds for 3 days... her blood pressure med essentially squeezes her intestines, decreasing blood flow to them, so at a certain point, if you put food in the belly and there isn't enough circulation to digest it... could be bad... she still gets all her nutrition via IV fluids called TPN)
CSA: 192 (Yay! I'll take ANYTHING under 200 at this point... had to get medieval again in rounds on the BMT attending and Pharmacist to make sure they are not blowing this off)

Today, Bella's blood pressure has been stable enough to start pulling some of the fluid out of her that they left in her yesterday. This is great because it normally takes Bella several days to get 700mL off her. We don't want to be stuck in ICU for 5-6 extra days just because 2 nurses called out on 8/2. That would be lame. We have to get her back down to her baseline weight of 10.7 before we can start talking about extubation (taking her off the ventilator). Yesterday, when I met with Dr. Tolar, he seemed to think (all things being equal) that we might be able to start that process roughly a week from now. After yesterday's debacle, it might be a little longer.

We're also not quite that optimistic as there is still a piece of the puzzle that we haven't solved... her hemodynamic instability i.e. her inability to maintain her blood pressure on her own. It's like an episode from Columbo. I feel like Peter Falk; underestimated, but tenacious. I have had more than one doc prescribe a drug that has momentarily made Bella's numbers improve, then hang their hat on "that was the culprit," only to have the condition endure after they rotate off the unit. I'm still here... taking notes...

Anyhow, don't get me wrong; today overall was a wonderfully boring, uneventful day! We need a mix of those in the room to balance out the action and "messing with Bella" that went on yesterday. The one showdown we had in the room today was when they wanted to turn down the dialysis machine to "net zero." They had it running net zero over night, and her pressure looked great so at 1pm we went to net negative 10. That means that we pull off 10mL more than we give her every hour. It can cause her pressure to drop, and by 4:00, her numbers were starting to go low again. The resident wanted to drop her to net zero, but I wasn't having it. I told the nurse to bump up her blood pressure med a little as we have had to do on many occasions, so she went to the docs to ask, and came back with 'that look' on her face. I told her to send them in.

The BMT fellow was here at the time and I invited her to stick around and watch the fight if she wanted to, but she elected to remove herself from the room.

Again, to reiterate, we netted +900 over the past 2 days, so we are losing some serious ground on our fluid loss plan, so as Dr. Verneris said, we don't want Bella lingering around the ICU any longer than necessary. I stated my case, then the resident, who I am growing to like a bit more each day, stated hers. Then I counter-offered, and just as I counter-offered, BING, the blood pressure numbers popped up on the monitor and Bella had rebounded! That's my girl! She knew daddy was fightin' for her and squeezed a little to help out!

I left for dinner thinking I head successfully headed off the attack, and when I returned, found out that not only did the resident honor my offer, but even acquiesced and followed my original wish when Bella dipped during dinner, and upper her meds while leaving the prisma at net negative. Since we returned from dinner, her numbers have looked great all night, and we are still pulling off 10mL an hour! Go Bella!

So, as we close for the day in our little fishbowl, Bella continues to hold her own. She's far from out of the woods (the charge nurse tonight told Ang and I that Bella is currently the sickest patient on the unit - to which we simply find hard to believe), but we're not getting worse. Remember, when we came in here, we had respiratory failure. Now we have respiratory failure, renal failure, V.O.D., and a pleural effusion on her right lung, so things haven't gotten better since we arrived in the PICU 30 days ago, they've progressively gotten worse. So to hear today that her condition actually improved from yesterday was the first sign of sun after a l-o-n-g rain storm.

In other news...

Ali is having the time of her life up at the cabin, and that makes us SOOOOO HAPPPPPPY. You just want your kids to be happy at the end of the day, and to know that while one fights for her life, at least the other has days FILLED with fun, play, and JOY. We'll take it.


Iconic...


Magical...


Ben, Jack, and Ali... summer buddies!

Thanks for your continued love, prayers, and strength. We really appreciate that you are still by our side in all of this. We will continue to fight the good fight, and we will continue to keep the faith, just as you have. Thank you!

Good night.

11 comments:

  1. hi tim and angelique!
    tim, i met you a few weeks ago at ralph's house. i am an old friend of his, and ralph sr is married to your mom. my husband and i have become close to sheila, and she told me about this blog before she left for her visit with you. i came to check it out...read back quite a bit, and i check in every few days. your family, and particularly your little bella, are in our prayers. my heart breaks over what you are going through...i just can't imagine. we ask God for your continued strength, and for bella's well being and healing. we ask him to guide the hands, minds, and hearts of your medical team as they care for your precious baby. we wish you perserverance and peace.
    fondly,
    donna

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  2. I love this "boring" update! Glad things are stable and that its giving you some breathing space. Thank you for sharing your girls with us.I simply adore the Ali pictures...looks like she's having lots of fun!

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  3. When I read "Stable & Slightly Improving" I broke into a great big smile. What a great way to start the day, thanks for that Tim.
    So glad that things are boring, we like boring updates.
    Keep up the good work Columbo, you are doing great. Kick some EB butt for us, please!!!
    Take care and remember God Is Good. Love Leah's Nana

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  4. I know you are so excited to hear "improvement!" Thank you for taking us on this journey with you. There are lots of prayers and positive thoughts going out for your sweet girl!

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  5. Thank God for the "boring" update! We are so happy to hear she is improving. Still holding you close to our hearts and praying every day!
    Love you guys~
    The Vanderbooms

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  6. Lynne, Bob, Jack and BenAugust 4, 2010 at 8:46 AM

    Wow! Stable to slightly improving (and still cute) is the best thing I've read in weeks. I am so inspired by Bella's fighting spirit, and yours. We are picturing you in ratty old raincoat, cigar in hand, pouring over notes and barking out orders.

    Ali slept straight through, without even a whimper and woke up smiley and angelic. Turtle races in Nisswa today. She has requested a pink princess turtle. Shock! (Sad face when we told her they all come in one color and that's greenish, brownish turtle color.)

    Love you all.

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  7. Jack and Molly's NanaAugust 4, 2010 at 8:52 AM

    For some reason last night I wasn't able to leave a comment (was it something I said?) so I'm trying again this morning.
    As soon as I began reading your upbeat post I KNEW there had been a change in Bella's condition. I can't begin to tell you how thrilled I was to read your words. And the first thing that came into my head was the old adage about the longest journey beginning with a single step. Can't wait to read tonight's installment; hope you ALL have a wonderful day!

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  8. Thank goodness for stable to slightly improving! I hope she continues on this path. I love that she helped you out with your fight - go Bella!

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  9. So glad for "slightly improving!" Yay Bella! You guys are amazing parents!

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  10. Thinking about you Bella!! Praying night and day...love you girlie girl!!

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  11. Sending our love from your daycare family. I cannot wait to share the news from last night posting wit Joan today. Looking at Bella's hand brought tears to my eyes...it looks beautiiful. This journey is amazing, thank you for allowing us to share it with your family. Ali looks like she is having a blast and it sounds like she's got the preschool thing under control. She is such a sweetie, who can resist her charming little personality. Will be praying and sending you positive energy and love.

    xxoo-
    Lara Seto-Davidson (Braeden's mom)

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