Crazy Heart Mama

Finally, I spoke with Dr. Dreyer from Texas Children’s Hospital about a week ago.  I’d been emailing the transplant coordinator back and forth, but had still not heard from him.  The heart team was supposed to present Colman’s case at conference the Monday after his heart cath, but they ended up not getting to it.

(I was somewhat frustrated, but felt this was a good sign that Colman was not at the top of their list.  I figured it meant Colman did not need to be urgently discussed, which is good.)

I found out through the transplant coordinator that they did, indeed, meet about Colman the second Monday after Colman’s heart cath. After waiting a few days and not hearing from Dr. Dreyer, I finally called his office number to leave a message.  The secretary started taking my information down and then said, “Oh, wait. Dr. Dreyer is available right now.”

Well, crap! I was just about to enter a school zone because I was on my way to pick up Liam and Colman from school.  I made the conscious decision to hold the line. Dr. Dreyer is never quick about anything, but I figured it would be worth the $200 ticket. Plus, my hubby is a criminal defense lawyer. Surely, he could finagle me out of a traffic ticket?

I hope. Fingers crossed on that one. Last time I received a ticket, which was for an overdue inspection, (Thank you, Shavano Park Police!) I handed it to Kevin to take care of and he folded it up and put it in our Persimmon tree. When I asked him about what had happened on my ticket a few months later, he gave me a blank look. I ran out to check the tree and the ticket was still neatly folded there between the branches. The next day, he went to court and got my ticket dismissed and the warrant for my arrest lifted. The judge asked him, “Well, do you want the warrant lifted or would you like me to have her arrested? Your choice.” To which Kevin replied, “As tempting as that may be, I have three little kids. I really need her in the free, please.”

It was so romantic.

Anyway, I digress.  Dr. Dreyer finally came on the phone as I was being hyper-vigilant about watching for darting children and we had a good discussion about Colman. I think I mentioned before that Colman’s pulmonary pressures from this heart cath were very much improved from his last cath and his atrial fill pressures were much better as well. The giant leak in his tricuspid valve is still a major concern, but they feel like we have a little more time to watch his heart and wait and see.

They did have a conversation in conference about open-heart surgery to try to fix Colman’s tricuspid valve, but everyone was in agreement that that would not be a good option at this point in time. Dr. Fraser and Dr. Dreyer had both come to the same conclusion about the valve surgery before the conference. I understood Dr. Dreyer to say that after Dr. Fraser went over all of Colman’s operative reports that he called Dr. Calhoon and spoke to him about Colman’s last open-heart surgery, the Fontan, and what went on during that surgery and what Dr. Calhoon remembered about repairing the tricuspid valve at that point in time.

I’d already spoken to Dr. Rogers a few months ago and knew that Dr. Calhoon didn’t feel a tricuspid valve repair would be beneficial to Colman based on the previous surgical repair, so I breathed a huge sigh of relief that all of the TCH doctors were of the same opinion. As I’ve said before, I just really don’t have a good feeling about that particular surgery. Any time, doctors use words like “tricky” and “difficult,” it causes my spine to tingle.

Dr. Dreyer said that they don’t want to list him immediately since his pressures are so much better because they wouldn’t want to be in a situation where they would be forced into doing something too soon. Of course, they don’t want to wait too long either because we don’t want to get in a situation where Colman is running out of time.

The conclusion of their discussion was that it looks like we have a little bit more time to manage Colman with medication and closely monitor him. So we’re going to continue along in a wait and see type situation for the foreseeable future.

We will go back to Houston in the middle of July for some testing and checkups. Colman will see his pediatric cardiologist, Dr. Rogers, here in San Antonio on May 14th, as well as continue close monitoring with the CHOSA Hem/Onc Clinic on a monthly basis.

Wait and see is okay. I can do wait and see. We’re used to it. 🙂