Crazy Heart Mama

Colman was released about 9 p.m. last night, which put us getting into San Antonio around midnight. That’s the main reason I wasn’t able to post an update last night.

I woke up at 6 a.m. yesterday morning. Not because I was rested, but because I was freezing. I’d already stolen one of Colman’s blankets during the night I was so cold, but the thin hospital blankets do little to provide warmth unless you have, like, twenty of them piled one on top of the other. Colman had nineteen. I had two. As I laid there with my two measly blankets in the giant hole in the bunk mattress that I’m sure was left by someone who was much larger than me, I tried summoning the spirit of my great, great, great grandmother, who was an Eskimo, to give me strength to survive the night in the freezing cold, but all I could imagine her saying to me is, “Why the hell do you think I left my family and moved to Texas? Get your ass up and put some clothes on.”

I got up, dressed and put a little bit of mascara and lip gloss on. It makes me feel a little more put together. If you’ve never seen a parent or family room on a cardiac floor, it’s quite the sight. I’m positive whoever came up with the notion of zombies probably had a sick child in the hospital. “The Walking Dead” could pluck parents right out of any pediatric cardiac floor in the country and use them as extras. Plus, it makes Colman feel better if I seem my normal self, even though I’m a zombie on the inside. One morning a couple of years ago when Colman was in the hospital, I slept late with him. When we woke up, he said, “God, Mama, you look awful. Am I really that sick?”

Colman woke up right after me around 6:30 a.m. and said, “Mom, I feel better. I just need them to take this out,” gesturing to his IV “and we can go home. Let’s go on a walk.”

“Let me put my jeans on and I’m ready.”

We walked around the floor and several of the nurses commented, “You’re up early,” to Colman.

“The bed is not my friend,” he said. “I’m going home today.”

I hoped he was right, but in looking at his little face, hands and feet, I wasn’t so sure. He was really puffy with fluid.

We got back to our room and respiratory therapy came in and gave him his breathing treatment. When we went to brush his teeth afterwards, he looked in the mirror and gasped. “Oh, my gosh. What’s wrong with my face?” he asked, pushing his fingertips into his cheeks and under his eyes. “I look ugly.”

“No, baby, you’re not ugly. You just have a little bit of extra fluid we need to get rid of.”

Around ten o’clock, we’d already made several laps around the floor to try to mobilize as much of the fluid as possible and Colman had eaten a bagel. We went for an X-ray and echo that looked good. Then we talked to Dr. Liou between her cases and she ordered an extra dose of Lasix for Colman, but warned us we might be spending another night at least. There was some confusion because we’d been keeping track of Colman’s input and output and it looked like he hadn’t peed in a while. He informed us that he’d peed in the shower. (Oops!) The nurses reiterated the importance of being able to track his fluid and Colman said, “I think it was probably about five ounces.” He’s such a rascal.

From past experience, I know how touchy fluid management can be. We’ve been hospitalized for days because of fluid.

They let me give him our home meds instead of taking the hospital meds. I always cut Colman’s blood pressure pill in half and put it in a capsule so it’s easier to swallow. If the pill is at all chalky, it sticks to his tongue. And he only takes the cherry aspirin. He hates the orange, which is all the hospital ever has. One of his nurses teased, “You’re such a little diva.”

And Colman said, “Yeah, does this fluid make my butt look big?”

Colman looked a lot better that afternoon, but I thought he still looked like he had fluid, so Dr. Liou’s nurse took us back to the pre-op area so we could weigh Colman on the same scale to see if he was still retaining fluid. They’d weighed him there right before his cath the day before. Sure enough, he was four pounds heavier, even though he was looking so much better.

We kept taking frequent breaks and walking around the floor, all the while dodging some super cute little guys racing tricycles and big wheels who were about Rowan’s age. They’d all had open-heart surgery, and had been in the hospital a really long time. They were obviously a lot better and would be going home soon. (I think they went home yesterday as well.)

By the time Dr. Liou finished her second case and came by to check on Colman, he was no longer puffy. After talking through the signs and symptoms that could result from Colman’s new circulation, she released us.

Everything seems good so far. We go back to TCH next Thursday for a treadmill test and to meet with the genetics doctor. Then we have another appointment in transplant clinic on June 12th. They’re talking about administering the metabolic cart again to see if there’s any improvement in how many calories his body needs. By changing the hemodynamics of his heart, we’re hoping his heart will pump more efficiently and he will grow.

When I mentioned the results of the metabolic cart to Colman’s transplant nurse and the fact they said he’d need 2000 calories every day, she said, “Holy smokes! That’s a lot.” So we’re all hoping that changes to something that is a bit more manageable. Because where 2000 calories is totally manageable for an adult, that’s not very realistic for a little boy who is 3’11” and weighs 42 pounds.

For now, though, things look good. Colman is very pink and he feels good. And that is huge.