Heart Cath Results

So, it was a busy day indeed. And tomorrow will be as well. She did great during the heart cath and she is resting soundly now.

They tried to get an IV one more time this morning. They went straight for her scalp since they knew there were no other options. It didn’t work. So, they applied some numbing cream to her groin area and neck in preparation for lines. Then at noon, they gave her a shot to sedate her. Then at 1pm, she went in for the heart cath. My friend, Melissa, came up for the day, so we went to lunch and then went back to sit in the waiting room until it was over.

I don’t know if I’ve ever explained what a cath is. Basically, they put a line into her vein, which goes into her heart. Then, they inject dye through the line and take x-rays and films of the dye moving through her heart and lungs.

Dr. Moskowitz tried to get the cath in through her legs – neither worked. So, he had to go through a vein in her neck. Boy, she is going to be one sore, bruised, little babe. After the cath, she went straight to get the CT scan. They wanted it with contrast (when they inject dye), but they said that would have taken her over the limit of radiation exposure in a day. So, they did it without the dye. I had copies of the CT scan taken up in DC when she was only a few days old, so they will have that to compare. Hopefully, that will help.

At 4:30, Dr. Moskowitz came to let us know what he learned from the cath. Harlie is so incredibly complicated. Well, that he knew, but now she’s even more so.

1. She has only a middle patch of working lung tissue in her right lung.

The chest mass is taking up the upper and lower lobes and is squishing the center lobe and remaining lung tissue. The CT scan will help us determine what to do. We will discuss the results of that study tomorrow.

2. She has developed subaortic stenosis in her heart (a narrowing of the area below the aortic valve).

This is a new development since February’s cath, and was a complete surprise. It must be fixed within the next couple of months. Unfortunately, this means another open heart surgery soon. The team here is sending all the info up to the team in DC and they will go over what all this means and gather a plan.

3. The pressures are good in her heart and lungs right now.

This is very important as to how good of a candidate she will be to undergo the Fontan (the last heart surgery to finish the “repair” that has been started). The Glenn (which was done in March) re-routed the blood from her upper body straight to her lungs. The Fontan will re-route the blood from the rest of her body straight to her lungs. The harder everything has to work – the higher the pressures get. This is what makes someone a good candidate (less risky for the patient and better success) for the Fontan.

Some ideas to help make her a better candidate for the Fontan were to 1) remove the mass in the right lung, with the hopes that the remaining lung tissue grow and get bigger, and 2) perform the Fontan sooner than normal so the pressures don’t have the chance to get too high. They normally like to wait one year after the Glenn to perform the Fontan. So, I don’t know what they would need to do in Harlie’s case. That will be up to her surgeon and his team in DC.

I think if I had to break it down, the scariest thing for us, at this time, is that the Fontan is not a guarantee. I had no idea that this would be an issue. Once you start this transformation to a single ventricle heart, I didn’t think you could stop without finishing. I asked Dr. Moskowitz what happens if the Fontan cannot be performed and he said he didn’t know. He does not know of any history or cases of these surgeries being performed on a patient with only one lung.

Tomorrow, the pulmonologist will come and talk to me about the CT scan, and what we need to do about her lungs. I am assuming that if they want to perform surgery, it will be soon and it will be done in DC. Dr. Moskowitz was thinking that maybe they could do it at the same time, but I don’t know how the heart surgeon will feel about that.

Well, I know that is a lot of information and if you are still reading this, you are a good person. Thank you very much for hanging in there with me on this one. Harlie is now resting comfortably and because she has the line in her neck, they moved us back into the PICU – our old home away from home. I know most everyone over here (more importantly, they know Harlie) and the care is so much better, so I am able to relax a little. Hopefully, they will remove the line tomorrow, resume regular feeds, and with any luck, we’ll be able to go home on Friday.

Well, please keep Harlie (and us) in your prayers.

Thanks,
Christy