Crazy Heart Mama

I finally heard back from Houston. Dr. Jeewa presented Colman’s case to the other heart failure doctors and they decided that we need to come back to TCH for the talk, the book and the consent on December 19th, so we can start the transplant evaluation process for Colman.

The evaluation takes three to four days, which will be broken up over a couple of weeks. I’m unclear if they will start some of the testing on December 20th or not, but the transplant coordinator told me to go ahead and book a hotel room and plan on being in Houston for the 20th in case they want to get started.

Colman is up to 42 and a half pounds, but we still have no linear growth. I keep thinking if I can just get another couple of pounds on him, then maybe he’ll have enough extra to grow. We’re still making gains in the weight department, but it’s very slow-going because there are times when he’s just not hungry, which is indicative of this disease.

To list or not to list? It’s such a difficult decision. I’m hoping this talk and the information we receive from the transplant evaluation will help us make the right decision for Colman. I get the feeling the heart failure and transplant doctors feel Colman is teetering on the invisible list line and wish they had that one factor that would push him over into the list category.

Where’s the red, hot, swollen knee?

Our pediatrician has this little spiel he gives to parents (me) who call hysterical when their children are running a high fever.

It goes kind of like this, “Hi, sorry to wake you up, (3 a.m.) but my kid has 103.6 fever.”

Then he says, “Fever in and of itself is not dangerous. You can alternate Tylenol and Motrin if you’re concerned.”

What I’m thinking:  Seriously? The kid has 103.6. He’s about to spontaneously burst into flame. What kind of doctor are you?

“Okay. So when should I be concerned?”

“If there’s an additional factor, like high fever AND diarrhea, high fever AND vomiting, high fever AND a red, hot, swollen knee.”

A red, hot, swollen what?

It’s an example he uses for illustrative purposes and I think it gets the point across. This doesn’t mean Kevin and I haven’t teased him about it endlessly by asking, “Have you ever actually had a patient with a fever AND a red, hot, swollen knee?”

The answer to that question was, “Well, no,” until a couple years ago. After well over thirty years of being a pediatrician, he finally had a patient who had a fever AND a red, hot, swollen knee.

How random is that?

But that’s how I imagine Houston feels about Colman’s hypoplastic left heart syndrome with a super leaky tricuspid valve and no growth in 18 months. Does that equal a failing Fontan? I think they’d feel better about listing him if he had higher pulmonary pressures, frequent pleural effusions or a high BNP (heart failure number).

I’m not sure either. On one hand, I think, Ten medications and a CPT vest twice a day for thirty minutes isn’t so bad. He’s going to school. He has friends. He’s a pretty happy kid.  On the other hand, though, I think, He’s maximally medicated, out of surgical options and he’s NOT GROWING! What in the hell are we waiting for?

Then he cried enormous crocodile tears when we dropped off his daddy and brother at the airport to go to Montana for Thanksgiving. Colman knew the reason we weren’t all going as a family was because he’s not allowed to be in elevation because of his heart. No plane rides and no mountains of any size.

“Come on, Colman! No tears. Victoria, Texas trumps Montana any day. We’re going to have a blast. And just to prove it to you, we’re all going to have dessert before dinner tonight.”

That got a smile. And that’s what we did.

I’m hopeful this evaluation will shed some light on which direction we should go moving forward.