Crazy Heart Mama

I know I’ve mentioned hospital headache before, but I swear it’s a real thing. I guess it’s brought on by crazy amounts of stress and sitting, but I’ve found it lasts for days and hardly anything will help it go away. Yesterday, I finally broke down and visited a chiropractor. After having a stress headache for three days in a row that felt like it was creeping up from my overly stiff shoulder muscles, I needed some relief. Plus my neck sounded crunchy when I moved it, and that can’t ever be good.

I must confess that I’m sort of scared of chiropractors in the same way I’m scared of witch doctors. I try to avoid eye contact and keep conversation to a minimum. Please, don’t talk to me, just pop my neck back into place and I’ll be on my way.

But I wasn’t so lucky. First, I get a lecture on how I hadn’t been for an adjustment in over six months. (Because I have so much free time.) Then when she asked me why I thought my neck might be so stiff, I told her that three days out of the last week and a half had been spent sitting in a hospital all day long.

“Do you have a cervical collar?” she asked, holding one out.

“Yes,” I lied.

(Why do they always try to sell you stuff at the chiropractor’s office? Pillows, cervical collars, foam rollers. It’s just too much.)

“I suggest you wear your cervical collar next time you have to drive several hours, fly on an airplane or sit in the hospital for an extended period of time.”

Like I’m going to do that. I just smiled and nodded politely, while thinking, Yeah, I’ll get right on that. You are insane in the membrane, lady.

And I’m feeling much better this morning–Thank you very much–even though I’m sans a cervical collar because I don’t own one and I’m seriously hoping I never will.

We finally finished all three days of the transplant evaluation. To be clear, Colman is not on a heart transplant list yet. This evaluation will determine if they think he should be listed or not and when they think the best time is to do that. We turned in all the paperwork, so, now, we have to wait for the blood work to come back, which could take up to ten days, and for the doctors to finish all of their reports. Once all of that is completed, then they will present his case to the transplant committee. We’re hoping to know their decision in the next two or three weeks.

We did talk to Dr. Fraser, the cardiothoracic surgeon, on Monday morning and discussed open-heart surgery to try to fix the tricuspid valve versus heart transplant. Dr. Fraser thinks trying to fix the tricuspid valve is a very bad idea. He said, “That valve is thick, ugly and it doesn’t move well. Dr. Calhoon has already had a crack at it, and I don’t think there’s anything anybody can do with it at this point. Colman is an insightful little boy. I feel like I’d have a hard time convincing him to go through this major open-heart surgery when best-case scenario, I might be able to bring that leaky valve that’s about a three on a scale of one to four down to a one and a half, maybe. And he might not feel any better. He needs a new heart.”

Dr. Fraser was somewhat disappointed to learn Colman’s antibodies were so high, but that still didn’t change his mind on the tricuspid valve surgery. He did tell us that the heart transplant is a much less complicated surgery than the surgeries Colman’s undergone before. There are a few things that make Colman’s case not quite as straightforward because of his previous heart surgeries as, say, a cardiomyopathy patient, such as scar tissue, collaterals, a revision of the aorta and reattaching the pulmonary veins to the heart.

We also had a meeting with a pharmacist and I was shocked to see the list of medications Colman would be on immediately after surgery. I think they had listed seven medications and Colman is on nine presently. In a perfect world, Colman could be down to two medications, twice a day, a year post transplant, but there might be one or two others. Those two medications are non-negotiable and he will have to take them his entire life.

Piece of cake.

So that’s kind of where we are. It’s a relief to be back in San Antonio and have the evaluation behind us. Now, we settle back into the normal craziness of life. Liam has a terrible case of cedar fever and I’m on the hunt for an allergist that will let me give him the shots myself because if I have to take him twice a week to an allergist, I might lose my mind. The allergist that performed Liam’s testing won’t let us give him the serum at home. And that’s fine. I’d already decided we weren’t going back to him when he mispronounced Valentine’s Day. He was telling me that Liam should take the Singulair and Nasonex starting around Thanksgiving through Valentime’s (sic) Day. I thought I must have misunderstood him because he’s a freaking doctor for crying out loud, so I just checked to make absolutely sure.

“So you said start it at Thanksgiving, but when do I stop it again?”

“Valentime’s.”

And there you have it. The reason I need a new allergist.