Crazy Heart Mama

First, I’d like to say, Thank goodness I’m still alive. Because based on the picture above, if looks could kill, I’d be a dead duck. I snapped this picture of Colman through the window yesterday after I told him I thought he should go outside to play for a bit. He gave me a horrible look, and I said, “Little boys need sunshine. It’s a beautiful day to play outside.”

Then Colman said, “This is the worst birthday in the history of the world.”

Oh, the drama.

Yes, it was his birthday yesterday. He turned ten. And somehow he managed to suck every last bit of accomplishment and nostalgia I might have felt about him turning ten right out of me.

I’m not sure why he felt his birthday was so terrible, except he didn’t have a huge party planned for this weekend since we were planning on the party being mid April. I took enormous cupcakes to his class on Friday. Then Kevin took Colman and Liam to the Astros/Rangers preseason game at the Alamodome on Saturday while Rowan and I went shopping for new summer clothes for everybody. We went out to dinner Saturday night at Colman’s favorite restaurant, Osaka. Yesterday, my parents came from Victoria to hang out and brought more cupcakes, gifts, and we sang happy birthday and blew out candles.

I can’t think about it too much, though, because where a good mother might wonder what went wrong, I just want to strangle him.

In related news (See strangling) I heard from TCH on Wednesday and they were all set for Colman’s case to go to Medical Review Board. Then I received a call on Thursday from the transplant coordinator that, in fact, the transplant team discussed Colman’s case privately and decided not to present his case to MRB yet because they had an idea that they wanted to explore that involved the cath lab that, she felt, might make him better.

I was cautiously optimistic. Especially when she couldn’t really tell me the specifics of what it was they were talking about, but promised I would hear from one of the transplant doctors on Friday.

I racked my brain all night Thursday trying to think of what it was they could do in the cath lab that might help Colman. The only things I could think of are things that have already been gone over once, twice, three times and rejected, but I’m not a doctor. So I was hopeful that once the team finally put their heads together that someone was able to come up with something new.

It’s like when Kevin is in the middle of a jury trial and, all of a sudden, he wakes up at 4 a.m., and says, “Are you awake?”

I usually ignore him because if I say, “No,” he knows I’m lying, right?

“Wake up. I need to go over something with you.” He turns on the lights as I struggle awake.

“Can’t we talk in the dark?”

He ignores me. All the lights blazing.

“I just won.”

“Here? Now? I hate to break it to you, but I don’t see a jury of twelve people here in our bedroom.”

“No, just listen.”

And just like that, it will come to him. The theory of the case is clear. The indictment is flawed. Whatever. But we talk through the case, his strategy, as I watch him pace in his boxers while he talks it out, thinks it through. And I think to myself, It’s a good thing you’ll be wearing a suit tomorrow. It’s hard to take a man seriously while they’re only wearing underwear.

By the way, this is not what happened with Colman’s case. I’m sure of it. I received the call on Friday afternoon from one of the transplant doctors. First thing, they want to take Colman off his Atenolol, which is a beta blocker. He said beta blockers make people feel kind of crummy anyway, so they were hoping that would make him feel a little better.

I’m all for that. It’s one less medicine I have to give and Colman has to take. Plus, we weren’t completely sure about putting a kid with a Fontan circulation on a beta blocker anyway. The thinking is the medication might decrease a bit of the workload on Colman’s heart since his resting heart rate was in the triple digits. It did manage to bring his heart rate down. Now that we’re taking Colman off of it, we need to have a repeat Holter monitor in a few weeks to see how his heart is doing without it.

The next big idea is to take Colman into the cath lab with the goal of closing his fenestration. We’ve been down this road before–several times. If they close the hole (fenestration) in Colman’s Fontan conduit, then that will raise his oxygen saturations. Higher saturations might make him feel better, although there’s really not a lot of data to support that. Closing the hole could also raise his pulmonary pressures and lead to another bout of plastic bronchitis. That’s the reason the cath doctor would not close his fenestration before. She felt it was too risky since he’d coughed up a cast before. So instead of the cath doctor we had before, the team is going to run it by a different doctor to see if he might feel any differently and let me know.

I think it’s reasonable to take Colman into the cath lab. I’d like to see what kind of numbers they get as far as his pulmonary pressures. The first cath he had, his pulmonary pressures were high. Then the second cath he had, the pulmonary pressures were so low that it had everybody second-guessing whether those numbers were good numbers or not.

I understand where the doctors are coming from to a certain extent. Colman’s heart has a good squeeze to it, and they want to get as much time out of it as possible. Colman is not really sick at the moment, so there’s this feeling of, “Well, we’ve got some time.” Unfortunately, I know first-hand how quickly things can change with a heart kid.

And here’s my big question: How does closing the fenestration help him to grow?

Nobody knows that answer because nobody knows why he simply stopped growing in the first place. I’ve been saying, “It’s his heart. It’s the tricuspid valve leak.” For the past year, they’ve tried to blame every single thing but his heart. And we’ve been on a mission to chase down every single rabbit trail they’ve thrown our way in order to rule these things out. Finally, when presented with all of the evidence, they agree with me. So, now, we’re back to closing the fenestration, which, in my mind, does absolutely nothing but increase some very worrisome risks.

If somebody mentions surgery on the tricuspid valve when every pediatric cardiothoracic surgeon between San Antonio and Houston has said, “No way,” I’m going to surrender my composure and patience and throw a major hissy fit.

Now, we wait. We wait to see if the cath doctor agrees to take Colman into the cath lab yet again and whether or not he feels comfortable attempting the closure. We wait to get scheduled. We wait to see how Colman’s heart performs off the beta blocker. If the cath happens, we wait to see if Colman feels better. Then we wait to see if Colman grows.