Crazy Heart Mama

Thursday.

I’m dreading it, but I also want it to be behind us already. Time is doing that weird thing it seems to do when you dread something. It’s speeding up and slowing down all at once. I feel like a little girl again, pouting in the department store on a shopping expedition about how much my feet hurt.

“Mama, my feet hurt. I couldn’t possibly walk another step,” so I’d sit down while my mom searched through the sale racks.

“Get up off the floor. It’s germy!”

And the next thing I know, I’m being dragged through the store at lightning speed despite my aching feet.

(I used to be positive they’d fall off after just twenty minutes shopping!)

I hate the thought of this cath on Thursday. I hate that the risks are so high and the hope is so small. But this is it. This is the last-ditch attempt to see if we’ll be able to work with Colman’s heart a little while longer. They’re going to measure pressures again. If his pressures are too high going in, we’ll have our answer and he’ll have to be listed for a heart shortly. If his pressures seem manageable, they’re going to occlude the hole in his Fontan conduit with a balloon to see if his heart and lungs will tolerate the extra pressure. Then if the cath doctor feels comfortable, they will patch the fenestration.

Then we keep our fingers crossed. Because even if they think he can tolerate having this hole closed, he could become very sick again. Closing the fenestration could cause the plastic bronchitis to come back. This closure could completely change the hemodynamics of his heart–not in a good way. The results of this closure could wreak all sorts of havoc on Colman’s little body. Then again, if he’s able to tolerate this procedure, his oxygen levels might come up close to a normal range and might make him feel better. However, nobody can tell me how having higher oxygen saturations affect growth.

I guess my problem is that nobody knows what’s going to happen, and I feel like we’re all fumbling around in the dark.

They’re also going to do the metabolic cart on Thursday, which will tell us exactly how many calories Colman is expending on any given day. I’m very interested in getting the results of this study, so that we can make any changes necessary to his diet. They’ve already warned me that we may be in a situation where his heart is requiring too much energy–much more than he’d be able to eat in one day. If that’s the case, we’re looking at listing him pretty quickly thereafter.

So there’s a lot riding on Thursday, which feeds into this whole feeling of dread. That’s not to even mention the procedure and the miles-long list of stuff that can go wrong in a cath lab. I have to keep reminding myself that Colman has always been extremely stable under anesthesia and I’m hopeful Thursday won’t be any different.

I think we’ll be spending the night in the hospital Thursday night. Last time, they gave us a choice. Colman begged to go home, and I caved. As we were getting into the elevator the nurse reached in to keep the door from closing and said to Colman, “Honey, if you feel like you wet your pants, but you know you didn’t wet your pants, you need to tell your mommy right away.” Then she looked at me and said, “Mama, you hold pressure to his femoral for fifteen minutes, no peeking.”

“Just kidding,” I said. “I think we should stay.”

“Oh, you’ll be fine. That’s only ever happened twice in the ten years I’ve worked in the cath lab.”

I didn’t feel fine. I felt like I had a china doll strapped into the back seat of my car all the way back to San Antonio. It was night time and I couldn’t imagine myself on the side of IH-10, cars barreling past, trying to stop a major bleed like that. Somehow, I exude a confidence to medical personnel that is not in line with what I actually feel. It’s mind-boggling. Because, really, I do not feel I am equipped to handle that sort of an emergency.

So I’ve already told Colman if we are given a choice, we’re staying at the hospital. There is no amount of begging or pleading that will make me change my mind.

As for Colman, though, he seems to be feeling a lot better since he’s off the beta blocker. I haven’t had to pick him up early from school near as often as I was before, which is a huge plus all the way around. Last week, he had a dental appointment in anticipation of the cath this week. TCH needed the dental clearance.

I did get a call yesterday from Colman that he was tired and that he wanted me to come get him. I wanted to ask, “Who’d you flip off now?”

Last week, I got a call that Colman was feeling bad, so I went to pick him up at lunch and brought him back to work with me. He seemed fine. Not sick at all. He laughed and joked around with my judge back in chambers, and I thought something must be up. I missed a call from a friend later that night, who has a son in the same grade as Colman. She left a voicemail saying, “Call me back. I’ve got something funny to tell you about Colman.”

When I called back, she told me that in inquiring about her son’s day at school, she asked if anything eventful happened, he said, “Well, some girls were giving Colman a hard time and being mean in the hall and he turned around and gave them the finger.”

Well, hell.

That is kind of funny if you know Colman. He’s such a rascal. But, really?

So I got off the phone and I told Colman, “I heard what you did today at school. Something about some girls were being mean on the way to strings class and you showed them what you really thought?”

His big blue eyes filled with tears. “I’m sorry, Mom. But they’re just so rude. I hate girls. They’re such jerks.”

Well, that’s a two-way street.

“I know. But you can’t just go around flipping people the bird when they make you mad. That kind of behavior reflects badly on you and on us, as your parents. Do you think I go around flipping people the bird all day?”

“No,” he said.

“Can’t you just give them the finger in your mind? You can think it, but don’t do it. That’s what I do all day, every day,” I stated matter-of-factly.

He giggled.

So I’m not sure if this is progress or not. First he says the eff word in first grade. Now, he shows the symbol.

Progress? I think not.

However, for somebody who’s been dragged through hell and back, I do admire his fighting spirit.