Crazy Heart Mama

Sorry it has taken me so long to update about Colman’s heart catheterization on Wednesday. I was getting over what I term “Hospital Headache.” It usually starts about an hour into whatever procedure or surgery Colman is undergoing and seems to get worse in recovery. I tried drinking lots of water, eating something, caffeine and Motrin, but it just seemed to worsen. I finally took a nap yesterday afternoon and felt a little better afterwards.

Colman and I were given the option of staying the night at the hospital Wednesday night or heading home to San Antonio, and so we chose to hit the road at 9:30 Wednesday night. As we were getting ready to leave the post-op recovery, Colman’s nurse said, “Now, Colman, if you feel something really wet, like you wet your pants, you need to tell your mommy right away. Okay?” Then she showed me where to hold pressure on Colman’s femoral artery, and that I would need to hold pressure for ten minutes, no peeking. Bleeding was a little more of a concern this time because of the blood thinners Colman has been taking.

Um, just kidding about wanting to go back to San Antonio.

The nurse assured me Colman would be fine. After the heart cath, Colman had to lie still for six hours with a pressure bandage on his groin. We took the bandage off in post-op and let him walk around for a few minutes and then stayed an extra thirty minutes to make sure he wasn’t going to blow. I still felt like I was driving back to San Antonio with a china doll strapped into a marble car seat. Every bump I hit, I’d ask, “Colman, are you okay?” which woke him up and totally annoyed him, but I was scared he was going to start bleeding and be asleep and not realize it. Poor guy. In hindsight, we probably should have stayed at the hospital, but he really wanted to wake up in his own bed. I can’t blame him.

Colman ended up being first case on Wednesday morning. As soon as anesthesia put Colman out in the procedure room, Dr. Fraser came in and removed two sternal wires from Colman’s chest. These wires were put in place during Colman’s third open-heart surgery, the Fontan. Turns out, three out of four of the wires were broken, which is not uncommon since they bend and break as kids grow. Interestingly enough, the wire that was bothering Colman so much was the one wire that was still in tact. The second wire that was removed was a wire that was bothering Dr. Fraser. In other words, he thought it might bother Colman in the near future so he went ahead and removed that one as well. So Colman has two very small incisions along his chest scar that were closed with glue. When Colman started to wake up from the anesthesia, the first thing he did was feel the spot on his chest where the wire had been and relief flooded his little face. He said, “Phewf, that’s gone.”

Then I showed him the surprise that Amy, the nurse practitioner, brought him, which were the two sternal wires in a specimen container. They were going to send the wires to pathology, but everything looked so good, Amy thought it would be a fun souvenir for Colman to have. Colman got big tears in his eyes. Maybe that was too much too soon. The wires were a lot longer than I would have thought, and just waking up, I think he kind of freaked out. Later on, when he was a little more awake and feeling better, he asked me if he could see the wires again and he thought they were pretty cool. He can’t wait to take them to school for show and tell.

The heart cath went really well. Colman stayed very stable during the whole procedure, which is always a huge relief. Much to everyone’s surprise, Colman’s pulmonary pressures are much better. He measured at a seven where before his pulmonary pressures were fifteen. Also his fill pressures into his atrium were four millimeters of mercury and he was measuring ten before. This means that the Sildenafil that Colman is taking three times daily is doing the job its supposed to do.

(And I will continue to receive emails about Viagra that I can get from Canada, spelled Vigara, and emails from somebody named Big Willy who can enlarge the size of my penis.)

What do the results of lowered pressures mean exactly for Colman? It’s better news than anyone was expecting. I think it means that Colman is not being listed for a heart transplant immediately, which was the thinking going into this heart cath. In talking to the doctor who did Colman’s cath, she said that the heart failure and transplant doctor, who came by to ask her to do another cath on Colman last week, told her “We need to get him into the cath lab so we can list him right away.” Now, with these lowered pressures, it looks like we can look at transplant as being a little farther down the road than we thought going in to this procedure.

The doctor spent the last two hours of Colman’s cath trying to ballon Colman’s right femoral artery. She was able to get through this time, but the vein had narrowed to one millimeter for about the first six centimeters and then opened up to about five millimeters after that. The angioplasty did not work, so it looks like that access site is lost to us now because of all the scar tissue Colman has from previous caths. From now on, they will have to enter his body through his left leg or his neck. The fact that Colman’s doctor was able to thread the catheter through an opening the size of one millimeter is incredible to me.

The main problem is Colman has never returned to baseline after going into heart failure in July of 2012. He has a two-chambered heart with a huge leak in the tricuspid valve, the only valve between his two chambers, and he continues to tire very easily. Another huge concern is weight loss and the fact that he just doesn’t seem to be growing. I have redoubled my efforts as far as his nutrition goes, and I am writing down everything that he eats here at home to try and figure out how many calories he’s actually taking in.

Now that his pressures are better, the team in Houston is now thinking about fixing his tricuspid valve, which would be Colman’s fourth open-heart surgery and the second time that valve has been worked on. Dr. Fraser thinks there is something that he can do to make it better, but he told me that it is not an easy surgery. (Alarm bells for me. That means it’s going to suck for Colman big-time.) They have to do a risk-benefit analysis to decide if it would even help Colman. If Colman would only get six months out of a new valve, then it wouldn’t be worth putting him through it. If he could get years out of a new valve, it might be worth it. Another question they are looking at is even if they were able to fix the valve, would it make him feel better? Would it improve his quality of life?

The team is supposed to present his case at conference next Monday morning and come to some sort of decision about a plan moving forward. Another option would be to continue monitoring Colman very closely. Eventually, over a period of time, his atrium will start to become very enlarged because of the tricuspid valve leak and that would be an indicator that things are getting worse and it would be time to put him on the heart transplant list. I like the wait and see approach as does Kevin, but we told the team in Houston that we would be open-minded to the idea of the repair.

If we decide that the surgical repair of the valve is the best option for Colman, the team at TCH will do everything beforehand to work Colman up for heart transplant so that if the surgery doesn’t go well, they can list him immediately at the push of a button. (Again, alarm bells for me about that surgery.)

If we list Colman for heart transplant before he’s super sick, we could wait years in Houston. The huge advantage to that is the ability to turn down hearts. If we get the call and it’s a mediocre organ, we can say, “No” and wait for the best heart for him. If we get into a situation where he is listed urgently, i.e., in the CVICU, we have to take whatever we get when that call comes in. That means if it’s a crappy organ eight people have already turned down, we’re going to put it in my kid and cross our fingers it’s going to work. I don’t necessarily like that scenario.

All in all, I wouldn’t say it was great news because we’re still talking about heart failure, transplant and open-heart surgery, but it was not bad news. And as Kevin said to me, “You know, I’ll take not bad news as good news.”

I have to agree.