Tuesday, August 12, 2014

Explaination and Plan

Yesterday, was a very shocking and upsetting day. We and our team of doctors, went into the catheter fully expecting to be moving on to the Glenn surgery. The cardiologists had even set aside next Wednesday to do it. We were beyond happy to finally be out of interstage and progressing towards getting Tehilla to a better place. So, you can imagine, why we feel like the air has been knocked out of us.

This is the exact reason why heart catheters are done, even though it is a procedure that holds many risks and requires general anesthesia. There are those infrequent times, where you just can not get an accurate full picture from an echo.

As, I explained in the previous blog posting, Tehilla suffered a serious complication immediately at the beginning of the catheter. She had an AV Block. While obviously, our doctors are trained to expect any number of complications, and to be able to properly handle it there is quite a large team of doctors that are present for the catheter- this still took everyone by surprise. Thank G-d, Tehilla came out of the AV Block okay. This is something completely separate to her HLHS and does not effect her on a daily basis. It is however, something that will always have to be taken into consideration and they will be prepared for, when doing any future procedures.

After Tehilla recovered, they went back in and did the catheter. The catheter showed two major problems for moving forward with the Glenn. The first is that the blood pressures inside of her heart are very high. The second is that her pulmonary arteries are extremely small. At the moment, on the outer side of the pulmonary arteries, that feed into her lungs, they measure 5.5 mm and the center area of the pulmonary arteries are 3.5 mm. This is much too small. If they were to do the Glenn, with her pulmonary arteries like this, her blood flow would bottle neck, and she would get insufficient blood flow to be able to breath and would actually end up with an enlarged, very blue head.

The first problem with the blood pressures being too high, should be able to be resolved through medication. They have raised her dose of Enalapril to the highest possible. When we go back for a check-up, they will see if it has helped enough. If not, there are other medications they will give her.

The second problem with her pulmonary arteries can not be resolved. They have to grow on their own. There is no explanation for why they have not been growing. There is also nothing that can be done to force them to grow. They have to do it on their own.

So, the plan is to wait. I am paraphrasing our conversation with our cardiologist when I explain this next part:

We wait. We wait until they grow.

How long can we wait? As long as she is doing well, we continue to wait. There is no reason to believe that she will not continue to do well, and so we wait, however long it takes. People have been in interstage for years. As long as she is doing well, we will wait.

You said, "as long as she is doing well", What does that mean? That her saturations remain in her range of normal (74-78) and she continues to develop and do well.

What happens if she starts to not do well? Then we have to get creative. We will have to take drastic measures.

Do you mean a heart transplant? Yes. A heart and lung transplant.

...but we are very very far from there. She is doing well. She has been doing well. There is no reason to believe that she will not continue to do well. So, we have no choice but to wait.


Shortly after that, Ron bumped into our surgeon, Dr. Erez. He said he had looked over the images and feels that in 3 months time, she will have grown just the little bit more that we need and he will put grafts on the areas that are not big enough. He felt very positive that we only need to wait 3 more months.


Dr. Golander, our cardiologist, came to talk with us again, and felt that our surgeon was being impatient and that we had to wait and not make any assumptions that it would be 3 months.


This morning, I met with Dr. Golander again. The measurements from the catheter had been fully analyzed. Certain aspects, showed that she is perfectly ready for the Glenn, such as her resistance pressures inside her lungs. But again, there were the two problems, I mentioned. Dr. Golander feels that we need to keep waiting, but there is the possibility that in a few months time, there should be the growth in her pulmonary arteries that we need, and like Dr. Erez had said, grafts would be used to enlarge her pulmonary arteries.

There is discussion whether to do another catheter, when we believe that Tehilla's pulmonary arteries have grown. Given the complication that she had, they may choose not to do the catheter.

All of the cardiologists at Hadassah Ein Kerem meet once a week and discuss all relevant cases. They will be discussing what the plan should be for Tehilla and come to a unanimous decision.

In the mean time, we will be going for cardiology check-ups once a month.

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