Yesterday we went to Colman’s appointment at Texas Children’s Hospital in Houston, which required lots and lots of driving and planning. Kevin is in Lockhart trying a case, and it was up to me to make sure all the kids were sorted out on Monday, so Colman and I could go to TCH. Liam stayed in San Antonio with a friend, so he wouldn’t miss school Tuesday. Then I drove Rowan to Victoria on Monday, and he stayed with Mimi and Wendy (my parents). Then Colman and I drove to Houston and spent the night in a hotel, so that we could be on time for our 8:30 a.m. appointment. It felt weird having my family scattered all over South Texas.
You can imagine my relief when I finally had everybody under one roof last night around 8:30 p.m. Well, except Kevin, he’s stuck in Lockhart.
Colman had the usual echo, EKG, etc., done at 8:30, then we had our appointment with the heart failure and transplant doctor at 10:30. Colman has a sternal wire from his last open heart surgery that has partially worked its way out of his sternum, and it is sitting right under his skin. It is extremely painful. If he had ANY extra meat on his bones, it probably wouldn’t be a problem. For instance, if that were my wire, I would have plenty of padding and probably never even realize it was there. The wire has been this way for a couple of years now, but we really only had to worry about it during an echo, which he was getting once a year. Sometimes, Colman would have a particular shirt that would cause it to hurt, so he wouldn’t wear that shirt any more. And sometimes, he would say, “Mom, it really hurts when I press on it,” to which I would reply, “Well, don’t press on it.”
Now, he has an echo at least once a month, and Colman and I both have anxiety that the echo tech is going to carelessly run the transducer over it, and then I’ll have to peel Colman off of the ceiling. After telling the tech about it yesterday and pointing it out to her, I finally had a bright idea. I got a Sharpie and circled it. Problem solved, mostly. Why does it take my brain so long to work?
I spoke to the heart failure doctor who saw Colman yesterday, and he wants to do a heart cath sometime in the next six to eight weeks to get some new numbers regarding Colman’s heart. He told me that Colman’s heart looks no better than it did in August when he was brought in to TCH. The leak is still in the moderate to severe category, but he would characterize it as more severe and the heart function is not good. Colman’s heart function does not appear terrible, but it is not good either. Colman’s right ventricle is enlarged, and is not filling and emptying properly. The function is still better than what they would expect to see with the tricuspid valve leaking as badly as it is, but the doctor we saw yesterday thinks that we may be being deceived into thinking that the function is okay, when, in actuality, it may not be.
We did talk about transplant, and it seemed from our conversation like we might be going down that road sooner rather than later, but I will have no specifics until they get their numbers from the heart cath. I also requested that they coordinate a surgeon to come in and pull that sternal wire while he’s under general anesthesia for the cath, and they are going to try to accomplish that as well.
I told the heart failure doctor that Colman has been doing really well the last couple of months. School is going good, as well as everything at home. He hasn’t been as tired after school or tired getting up in the morning before school. And the doctor replied, “He’s in heart failure His heart is not better.”
Then it hit me. Colman has adapted. He’s adjusted. He has a new normal with this failing heart. I knew it wouldn’t get better. I have just been hoping it wouldn’t get worse for a while. As always, it is incredibly hard to reconcile how sick his heart is, how sick he is, when I look at his smiling face and sparkly blue eyes. But he’s sick. Really sick.
I didn’t need a wake-up call. I’ve always been wide awake to this disease. But I’ve gotten used to it, too. I’ve checked his nail beds on his fingernails and toenails against mine every day since the day he was born, and they’re always blue. I check his respirations. I check his pulse. I listen to his heart. I give him meds three times a day and breathing treatments. It’s crazy, but that’s my normal.
The doctor said that this is the scenario he would like: We get Colman listed for a heart transplant. Colman is able to stay out of the hospital while waiting. There would be no CVICU stay before transplant. There would be no worrying or trying to figure out putting in a ventricular assist device, which don’t really work on single-ventricle kids anyway. Colman goes to the hospital, gets his new heart and we go home.
I told him that I’ll take that scenario, and we all laughed.
TCH will be discussing Colman’s case in conference today, and I should be getting a call from the transplant coordinator to schedule a date for the heart cath in the next week or two. There is also going to be some discussion about taking Colman off of the Lovenox, which would be great. The thrombus that was present in his left ventricle is much smaller. Although it is still there, the doctor we saw yesterday thinks the Lovenox, at this point, poses a much higher risk to him than an embolism, which he thinks would probably never happen. Never say never, but I kind of have to agree. There’s really no way out for that thing.
Really, there was a lot of talk about nothing, except to reiterate how sick Colman is, but we cannot move forward with a plan until we get some new numbers from a new cath.
We’re back to the “How sick is he?” He has to be sick enough to be listed for a heart transplant, but not too sick or else he might run out of time waiting.