The good, the bad, and the ugly

Collins Family 2019 Holiday-84

Let’s start with the good news first. I took Colman to Texas Children’s Hospital in Houston for his cardiology checkup on Friday, 12/20. In six months, he’d gained 11 pounds and grown two and a half inches. He’s now 4’10” and weighs 76 pounds. For everyone that’s kept up with us, you guys know the struggle it’s been trying to get him to grow. Colman’s growth stalled out for over four years after a bout of heart failure and then he started growing ever so slowly. It’s been a half inch here and two pounds there. Nothing significant. This growth? This was significant. And it feels great to know he’s making progress.

The bad news was I noticed during his echo that a thrombus (blood clot) had again made an appearance in his left ventricle. And it was huge. It took up his whole left ventricle. The thing is he had a thrombus six years ago. It went away, but not really. I mean, it didn’t show up on his echos after ten months of Lovenox injections twice a day, but it did show up on a CT scan. So it’s always in the back of my mind. I always check the left ventricle during his echos. Sometimes I think I can see it making a comeback; sometimes I think I can’t. But on Friday, there was no missing it.

The first time it appeared six years ago, I called our cardiologist here in San Antonio, Dr. Rogers and told him, “Colman has a thrombus in his left ventricle. TCH wants to anticoagulate him. It looks like it’s about the size of a pinto bean.”

To which he replied, “Seriously, Mrs. Collins, a pinto bean. I doubt that.”

I was later vindicated in my description when Dr. Rogers saw the echo, and said, “You weren’t kidding. That thing is the size of a pinto bean.”

So I knew when I saw Dr. Dreyer’s face on Friday, he was not happy. When he brought up the thrombus, I said, “This is bigger than the one before.”

And Dr. Dreyer said, “Yeah, this one is huge. I mean, it’s huge. It’s the size of an Easter egg.”

I started to laugh at the comparison, and he looked at me like I was bit unhinged, so I said, “I swear I don’t think this is funny. I know this is not funny.” Except the way he said Easter egg, it was funny. Just not the fact that it’s in my child’s heart, hanging out in his left ventricle.

So we did the safest thing for Colman and we admitted him to the hospital. He was pissed. Like super pissed. It takes several days, sometimes even a week or more to get therapeutic levels when starting anticoagulation therapy, and here we were going into the hospital five days before Christmas. When Corey, his clinic nurse, asked him, “Colman, is there anything I can do? I know you’re upset.”

Colman said, “Yeah, never set another one of my checkups right before Christmas.”

I think we both said at the same time, “Consider it done.”

I thought we were going to breeze in and breeze out. I didn’t even bring my “go” bag that I usually take just in case we get admitted. I always throw that in. That’s how confident I was before reality gave me a quick slap as if to say, “Hey, stupid. You’re a heart mom. This world changes in an instant. Don’t forget it.”

Fate smiled on us, though, and we ended up getting out after only four days in the hospital, even though everyone had told us to plan on staying through Christmas. Colman’s first two blood draws came back at therapeutic levels, and we were able to be discharged.

So Colman’s back on Lovenox injections twice a day for the foreseeable future. The hematology team is going to have a care conference with heart failure and talk about transitioning Colman to something he can take by mouth like Warfarin or Coumadin since this is now the second time this has happened and because that thrombus got so big so fast. He will have to be on some sort of heavy-hitting blood thinner for the rest of his life.

The problem with his left ventricle is it’s tiny and underdeveloped and it doesn’t do anything. All the blood pumps in his right atrium and pumps out his right ventricle. The puny mitral valve opens and lets blood passively flow into his left ventricle and it kind of swirls around in there, but never gets pushed back out again because the left ventricle doesn’t do anything. It’s completely useless in this instance of anatomy. So that’s what gives the blood a chance to clot. The danger comes in if a piece of that clot breaks off or somehow the thrombus were to back its way out of the mitral valve and go to his lungs or brain, which would be catastrophic.

I hate that we’re back to injections twice a day. His abdomen and arms already have terrible, ugly bruising no matter how much we try to rotate where we do the shots. But I’m thankful we caught it when we did, and I’m hoping the thrombus stays stable.

 

 

 

 

 

 

8 thoughts on “The good, the bad, and the ugly

  1. Praying for you….the family….and especially Colman…..He is one tuff guy!! My mom has been on those strong blood thinners for about four years….ugh….but injections suck too. Anytime you are in Houston….we should try to meet up.

    Love you and glad you all were home for Christmas! Samantha

    • Love you girl! He’s a warrior and so are you! I love the way you write-so relatable and so authentic. An Easter egg? Really?!? But it couldn’t be just a regular old egg, right? Will be praying for C and the whole fam. Glad you got back home! ❤️🌲💚

  2. Dear Heather,
    It is late on this Christmas Day and I’m just now reading your blog post. Thank you very much for sharing about Coleman’s recent visit to the doctor in Houston. Though the news was unexpected and comes with new challenges, not to mention it almost put a damper on Christmas (but didn’t!!!), I can’t help but think what a blessing the timing was after all. Sending love and prayers that Colman’s heart will respond to the desired treatment and that the long term plans will fall into place. God bless! Elise Frierson

  3. Dear Heather and family My heart goes out to you all.
    I can’t imagine the silent thoughts and worry that must whorl around your minds constantly 24/7,
    It seems so unfair that a wonderful family like yours should suffer all the pain.
    My sincere thoughts are with you all and I do hope Colman continues to grow and improve day by day in 2020.
    Regards Gail xx

  4. Colman has been looking so good in his pictures. Definitely can tell he is growing.
    I Thank God that you took him for his checkup and they were able to detect the Easter Egg size clot.
    Love you Colman❤️❤️

  5. No better team. Corey used to be in the cathlab when I was there. She is the best, kept me from going crazy many times. Doc. Dryer was always said to be the easy going one. Always hoped he was the one making rounds on the day you want to go home. 😆

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