Tuesday, November 4, 2014

The Plan

So, today, we sat down with Dr. Golander and he went through everything with us.

The final number analysis from Tehilla's catheter showed that the pressures in her heart are borderline. What this means is that she is not an "ideal" candidate for the Glenn surgery, which she needs.

Dr. Golander has decided to start Tehilla on a strong heart medication called Digoxin. In Dr. Golander's words, "We are going into uncharted waters." This is a medication that has several different uses in heart patients. It is often prescribed to help the left ventricle pump better. He is hoping that it will help Tehilla's right ventricle pump better and effect her heart pressures. (Tehilla has no left ventricle). As Dr. Golander said, "You will not find clinical trials or research write-ups about what we are trying. It hasn't happened."

As Dr. Golander put it, there won't be a backlash. It won't cause higher pressures- so it is worth a try. Dr. Golander has used this medication previously on other single ventricle CHD patients to force the right ventricle to pump better and it has shown results. So, we basically can't lose by trying this.

And we are doing the Glenn.

Tehilla will have the Glenn surgery with a patch on her pulmonary arteries in early December- in one month's time. The medication is a simple trial. If it works, fantastic. If not, not. We will not wait long, because Tehilla simply won't be able to wait long.

So, we are progressing to the Glenn. The Glenn is a completely different circulation of the heart. It changes everything. And very often, the pressures change with it.

Should it not work. Should they do the Glenn, they will see, almost immediately, that it is backfiring. That the pressure are high and there is an overflow. They will be watching during surgery. Once the Glenn is completed, Tehilla will be taken off of bypass and they will watch what happens in the operating room with her chest still fully open. If it fails, they may see it then. If not, it will usually show itself within the first 24 hours.

If Tehilla's Glenn is unsuccessful, then they will bring her back into surgery and undo the Glenn. They will put her back on the Norwood circulation with her BT shunt that she already has, but they will keep the patch on her pulmonary arteries there. And we will be forced to wait longer.

If it succeeds- if her Glenn is successful, then all of the problems that we have been facing should have no effect on her future success. It is like starting fresh.

Dr. Golander was very clear in explaining, "She is a difficult case, but not a hopeless case. And this is the best plan for her." In their words, they are cautious but feel good about going forward with this plan.

Ron and I picked Dr. Golander's brain for a long time and feel very confident in our medical team. We feel that this is the right plan for her.

There are very big risks and if we weren't scared before, we are terrified now. We have fully digested the magnitude of Tehilla's situation and have no choice but to carry on.

So, here is where we are begging for help, from the depths of our souls. Please help us.

Please pray with us. Please have your shul make a mishaberach (a special prayer said for specific occasions) in Tehilla's name. Please light an extra candle for Tehilla. Please grab a friend and tell them about Tehilla and ask that they do the same. Please put an extra shekel or dollar towards charity in Tehilla's merit. Please send your kid to school with Tehilla's name to pray for. Please bake challah for Tehilla. Please learn in Tehilla's merit. Please do everything and anything, because that is what we need right now.

Miracles happen all around us, on a daily basis. They have a way of becoming part of our daily routine, and we adjust to the magic and Heavenly sparks that course through them. While this miracle will work through medicine and science, it is no less a miracle. We really need G-d's hand to succeed. Please help that happen.

Tehilla bat (daughter of) Shoshana

1 comment:

  1. When I was a kid, one of my friend's mothers had a baby with HLHS. There was nothing that could be done. Tehilla already IS a miracle, All of these kids are. She just needs one more (for now).