Crazy Heart Mama

Colman and I went to Houston last Thursday for a heart check in their transplant clinic. I would’ve updated before now, but I’ve been very busy. Doing what? Well, specifically, I’m petitioning Merriam-Webster for the addition of the word “wenis” into the dictionary. For all of my friends who only have girl children instead of a whole passel of stinky, sweaty boys, it’s pronounced like “penis,” and is the love child so-to-speak of the words wiener and penis. I feel MW owes me this one considering they put “supposably” in the dictionary like it’s a real word. It’s NOT. If they put “conversate” in the dictionary, I will burn their building to the ground. That’s a promise.

As far as Colman’s appointment, though, everything looks the same with his heart right now, which is a good thing. Heart squeeze still looks good, but tricuspid valve is really leaky. We saw Dr. Dreyer and he wants to try to wean Colman off of the Sildenafil he takes three times a day. In order to do that, though, Colman would have to undergo another heart catheterization about six to eight weeks after the weaning takes place to check his pulmonary pressures again.

Ugh!

I asked Dr. Dreyer, “Can’t you just measure–”

“Nope. Nope. Nope,” he said, shaking his head.

“Okay. Guesstimate from an echo–”

“Nope. Nope.”

“There’s got to be some way to measure the pulmonary pressures without–”

“Nope. Nope. Nope. The only way we can measure pulmonary pressures in a child with a single ventricle Fontan circuitry is through a heart cath.”

I was under the impression that Colman would probably be on Sildenafil until we switched this heart out for a pre-owned heart, but Dr. Dreyer informed me that they’re really not sure what the effects are of long-term use of Sildenafil in children. Because I don’t know if y’all remember from previous posts, but Sildenafil was not made as a pulmonary pressure medication to be used in children. The intended purpose of Sildenafil (Viagra) was to correct erectile dysfunction in men. And because I get a prescription of the stuff every month, I’m positive that’s why somebody named “Big Willy” fills my spam folder on a daily basis. Honestly, before August of 2012, Big Willy didn’t even know me.

When I asked him to define “long-term use” he said they didn’t like for kids to be on Sildenafil for longer than a couple of years. Colman’s been on it consistently since August of 2012, so we’ve now met their threshold. I know Dr. Dreyer could feel my resistance to taking Colman back into the cath lab any time soon. A big part of it was probably my bad body language in the form of crossed arms, narrowed eyes and pursed lips. So we kind of came to an agreement of sorts. The tentative plan is to start weaning Colman off the Sildenafil sometime around April of 2015 and take him back into the cath lab in the Summer of 2015 to check pressures. Then we’ll go from there. He agreed with me that sometimes the enemy of good is better, so let’s just leave things as they are right now because Colman is feeling great. We had no linear growth, but Colman has gained three pounds since he was last at TCH for his heart cath which means on his frame he’s gone from Auschwitz-survivor skinny to supermodel thin.

I’ll take it!