Quick update from Houston

First of all, thank you to everyone who has called and texted checking on us. We truly appreciate it.

And now for a quick Colman update.

Colman was admitted to Texas Children’s Hospital yesterday. A week ago, he started coughing around 4 a.m. He couldn’t lie flat in bed without coughing, but once he stood up, he would stop. I suspected he had fluid overload, but it’s really hard to tell with Colman because he doesn’t really hold fluid peripherally, but more in his torso and belly.

The next morning, we checked and his weight was up. I also realized he’d missed two of his PM doses of Lasix. He’d accused me of micromanaging him when I’d asked whether he’d taken his medicine a few days before, and so I was like, “Fine. You take care of it then.”

I’m back to micromanaging.

I can count on one hand the number of times I’ve missed medication or forgotten to give him a dose and it was always remedied within hours. So up until last week, he had never missed a dose of anything. But there’s a first time for everything, and I’m hoping there will be no more hard lessons for either one of us to learn any time soon.

I gave him his morning dose of Lasix and he seemed a bit better. But that night, he started coughing again. I called his cardiologist in San Antonio to let her know what was going on. Then I called his TCH team and they said I could give him an extra dose of Lasix the next day to try to help him out. Then to give a larger dose of Lasix AM and PM for the next couple of days. He wasn’t feeling good and he didn’t look good at all, but I was willing to try to manage at home to try to keep him out of the hospital over Christmas.

I spoke with his nurse coordinator from the heart failure team on Christmas Day, and we decided it would be best for me to take Colman to TCH ER Saturday morning for evaluation. We already had a cardiac MRI scheduled for Monday morning (tomorrow) as an outpatient procedure.

It was definitely fluid overload, and he was in heart failure with a BNP over 600. (Normal is under 100.) I’m happy to say after a couple of doses of IV Lasix, he is feeling much better. However, they don’t think a couple of missed doses of Lasix would have sent him into fluid overload. And if a couple of missed doses did send him into fluid overload, that’s a problem because that means he’s a lot more fluid tenuous than anyone originally thought.

Something is off. Colman hasn’t been feeling well since October/November of 2019. We barely missed spending Christmas in the hospital last year because he had a giant thrombus in his left ventricle. He had one before several years ago, but he took Lovenox injections for ten months and it slowly but surely went away and stayed gone. Then, boom, giant thrombus was back and bigger than ever. When he had the first giant thrombus, I described it as a pinto bean in size to his cardiologist and he thought I was exaggerating. (I wasn’t.) His cardiologist here compared it to an Easter egg. I mean, it was HUGE. Or maybe I should say it was impressive. Whatever.

Then he had another heart failure episode and fluid overload in February 2020, where he ended up being life-flighted from San Antonio to Houston and had a short stay in the CVICU here at TCH. He underwent a heart cath in March, right before COVID really and truly hit and his numbers and pressures were really good, which doesn’t match with his overall fatigue and just not feeling well.

On echo, his heart function looks good. The squeeze of his heart looks good. His cath numbers are great. His pulmonary pressures are good. There is no objective/clinical reason that his doctors can see for his fatigue based on all the tests run so far, which is why I requested for them to go ahead and get the Cardiac MRI scheduled.

But something has changed because the giant thrombus came back. Then he had the heart failure episode in February. Now, this is the second heart failure episode and fluid overload in less than a year. There’s something there we’re missing.

I’m hoping we get some answers about the actual heart muscle and the condition it’s in, scar tissue, Fontan repair, etc., from tomorrow’s MRI.

Fact: Colman has a two-chambered heart with a severe leak in between the pumping chambers.

Half the blood his heart pumps doesn’t go anywhere, but backflows though the valve. That means that his organs are only getting about half the blood they need. And is the function of his heart really all that good if it’s not forcing the blood out to all of his organs? If he didn’t have the leak, would his function still be good? Because I’m not really sure his heart is actually doing much of anything when it’s squeezing away.

And I’m not sure any of that really makes much sense. Moving forward, we need to see what kind of data we get tomorrow and if we can continue to manage Colman with medication or if we need to start talking about working him up for transplant again.

So in a nutshell, we’re in Houston. Colman’s spirits are good. He’s happy he didn’t have to spend Christmas in the hospital, even though he felt “pretty crappy.” We’re hoping he gets released tomorrow afternoon after the Cardiac MRI or Tuesday morning if things are still moving in the right direction. So fingers crossed, everybody!

Happy Holidays from Houston,

Heather

10 thoughts on “Quick update from Houston

  1. Wow, Heather. You and Colman are two of the most fearless warriors I’ve ever known. Sounds like you’ve unmasked a very subtle, increasingly dangerous change in Colman’s heart condition. Thank God missing a few doses of Lasix was the catalyst for revealing so much more about what has been going on within Colman’s body. Sending love and prayers for a perfect plan to fully restore excellent health to Colman’s heart and body.

      • What a coincidence! That’s just kinda cool! I’ve got my hands folded in prayer. Love to Colman and the family and from one mom to another, deep prayers for you, Heather. You are amazing.

  2. Heather, you amaze me with your thoroughness in managing this issue. I’m so sorry you had to spend the holidays this way, and I hope you get some answers very soon. I miss you!

    Stephanie

  3. Prayers for Colman and your family. So glad that Wendy and Sharon have moved to SA to help you out! Jill Hohf Davol

    • Thank you sharing the update with me, Heather. The word that keeps popping into my head is “LOVE”. Just LOVE. Sending loads of LOVE to you and Colman. Y’all are so brave and inspirational.
      I realize as I’m reading this at noon on Monday, the cardiac MRI may already have been done. I do so hope it provided only good news, and you’re on the road to home. LOVE!

  4. Will and I are sending you and Col all the love we can! If your other boys need anything in SA, please holler! Praying for you both.
    Heidi

  5. Love, best wishes, prayers and cyber hugs to you all. Keeping you close to our hearts and waiting to see what results this latest “adventure” brings.

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