Crazy Heart Mama

There is no such thing as insignificant growth. That’s my new mantra. Colman measured 1.6 centimeters taller than he had on our previous trip to Houston. In talking to one of the heart failure cardiologists, he said, “Well, I wouldn’t classify that as significant growth. I’m disappointed.”

Truthfully, I was too, but it was something and that is a whole hell of a lot better than nothing. So now Colman is exactly 48 inches tall and weighs 48 pounds. An inch for every pound and I’m hoping we’ll add to that in the coming months.

We did have some good news. We’re weaning the Sildenafil medication and Colman is thrilled. It tastes nasty even though it’s supposed to be “flavored.” When Colman first started taking it, I kept thinking, How bad could it be? Then I tasted just a little on my finger and almost gagged. It tastes like hate giftwrapped in vomit. I’m not sure how Colman has been able to swallow an entire mouthful three times a day for the last two and a half years, but he’s been a champ. They lowered his dosage from 5.4 ml to 4 ml and that makes a huge difference already. Eventually, over the next few months, we will have Colman weaned completely off of it. The downside to weaning this medication is there is absolutely no way to measure Colman’s pulmonary pressures without taking him back into the cath lab. So he will undergo yet another heart catheterization sometime this summer to check those pressures. If his lung pressures are too high, he’ll have to restart the Sildenafil and probably stay on it indefinitely.

Other than the slow growth–which is still better than the no growth category–the doctors were pleased with how Colman seems to be feeling. They said we could move back to the cardiomyopathy clinic as opposed to the transplant clinic we’ve been in for the past year as long as we see a heart failure and transplant doctor in the cardiomyopathy clinic. This puts us back in the capable hands of our beloved Corey, the nurse coordinator for cardiomyopathy, and means I don’t have to break in yet another transplant nurse since ours was leaving.

Then this past week, I took Colman to see his pediatric cardiologist here in San Antonio. Dr. Rogers has been slowing down over the last couple of years and told us he was retiring after 39 years of practice. My first thought was, That’s nice, but not from us. I mean, he can’t retire from us!

I said, “Thirty-nine years is an odd year. I hate odd years. Why not make it an even forty?”

He said, “Well, I’ll be seventy which is even.”

How’s that for an OCD nightmare?

I managed to be somewhat cheerful during the visit. I mean, I knew this was coming eventually. I don’t think I ever let myself really contemplate the fact we might have to deal with Dr. Rogers retiring until a year or two after Colman’s third heart surgery. Then when Dr. Rogers started slowing down a couple of years ago, he assured us that even though he was cutting his caseload by two-thirds, he was keeping Colman. When most of Colman’s care was taken over by TCH, I thought how the timing was perfect since Dr. Rogers was going to probably be winding his practice down soon.

It doesn’t matter how many times I thought about it happening, it was still somewhat of a blow when it actually did. TCH has said there’s no reason to keep seeing a pediatric cardiologist here in San Antonio, but I disagree. San Antonio is where we live and it’s our jumping-off point. I need someone who is familiar with Colman inside and out in case of an emergency. I’ve met all of the other pediatric cardiologists at one point or another in Dr. Rogers’ practice, and there are several who I feel very comfortable with as far as Colman is concerned. That’s not the problem. I think the problem is the eleven years of history we share with Dr. Rogers that made the tears start to fall as I put Colman into the car to leave. And I wasn’t the only one. I heard big gasping sobs from the backseat. I told Colman, “It’s going to be okay. Dr. Rogers deserves this time off. He’s been taking care of kids a really long time.”

Although, selfishly, when I was lamenting the loss to my sister, Holly, later that day, I said, “You know, there’s something to be said for dying at your desk. Retirement, really? How could he do this to us?”

Colman said, “But he’s known me since before I was even born.”

And he has. He diagnosed Colman in utero. He’s been worried with us over Colman more times than any of us can count, and he’s been thrilled when Colman’s pulled through. We’ve talked for hours at a time when Colman’s been in PICU. He’s copied medical journal articles he knew I’d be interested in reading and saved them for our appointments. He’s never made any empty promises or told me not to worry because that wouldn’t be the reality we’re dealing with. And he never ever put his stethoscope to Colman’s chest without warming it first. He very gently told me to be on the lookout for ADHD since it’s prevalent in children with HLHS while I stared at him blankly as Colman climbed in his lap and wiped his nose on his tie. (What’s the etiquette when that happens, by the way? Buy a new tie? Pay for dry cleaning?) He’s been nothing short of fantastic and we’re going to miss him A LOT.

People don’t always get what it’s like to raise a child with a life-threatening condition. It’s a hard pill to swallow because Colman has always looked normal, although a little on the small side. It’s tough losing someone who understands the reality I face on a daily basis and who’s been a phone call away or a drive across town for the entire time I’ve had the responsibility that is Colman.

So it’s no big surprise that I’m sad. I knew I would be. I’m just glad I grabbed a shot of them together in case I’m a blubbering mess when we see Dr. Rogers one last time in July.

Colman and Dr. Rogers

Dr. Rogers and I discussed who Colman would see once he retires in August. There are a couple of different doctors within that practice that would be great. Actually any of them would be good. In talking to Colman about it, I told him I feel comfortable with several of the doctors. However, I don’t feel like that’s solely my decision any more. Colman’s old enough to have some input as far as his doctors are concerned and who he feels comfortable with as well. I think Colman liked the idea of having a little bit of input. 🙂