Sunday, March 27, 2016

A Little Non-Clarification

I will try to clarify everything that is unclear as of now...

So, today was a very busy day, where we got sent from one place to another, to take care of all the tests necessary before a heart catheter. We started the day with an echo.

We were seen not by our cardiologist, but by another (equally good) cardiologist. Tehilla freaked out the moment we put her on the bed to lay down and we took her shirt off. A little Peppa Pig on Youtube calmed her down and we were able to start the echo.

I won't pretend that I can read an echo or understand everything that is happening, but by now, I know what I am used to seeing and when something appears different. It was clear that the measurements being taken were not the same that we were used to. When the cardiologist started making "huh, hmmm, ok..." comments and his medical student gave him knowing looks, that it wasn't my imagination. Something was different.

The cardiologist explained that from the measurements taken her blood pressures appeared to be in the high range of normal for a child. Until now her blood pressure was in the high range of very high for a child. He then explained a lot of technical terms to back up his findings. There clearly was an improvement in her blood pressure. He called in the bat-sheirut (national service attendant) and asked her to take Tehilla's blood pressure in her left leg and right arm. Tehilla remained calm while watching Peppa Pig. Her blood pressure was a consistent 110/60 in both locations. A very good measurement for Tehilla.

He explained that she clearly still had reduced heart function and there was some little areas of narrowing that he could see on the echo. An echo gives a vague idea of what is going on, but by no means is a clear picture.

What it means?  So many possibilities.

But one of those possibilities is that her blood pressure is stable. And in that case, she is a possible candidate for the Fontan.

People don't understand why we are "excited" or pushing for Tehilla to have her Fontan surgery. For a regular person, surgery is scary and comes packed with risks. For a child like Tehilla- moving forward is the only way we want to go. She can not move forward without this surgery. Think of it as a milestone in a baby's life. You so badly want your child to learn to talk, to learn to walk. This is a huge milestone in Tehilla's life. She so badly needs the Fontan surgery.

So, before, we were told that she was not a candidate for the Fontan until her blood pressure was under control. That's gut-wrenching for us. It means not reaching a milestone.

And now!!! Out of nowhere, they believe that she could be a candidate. And more than that- in a few months time!

Now- I should prepare you that we may all get disappointed tomorrow. She may have her catheter and find out that her blood pressure is still very bad and that she is still not a candidate. So, back to what it all means...

They believe that there is some narrowing. How much remains to be seen in the catheter. Based on that, they will decide what kind of intervention needs to be done- whether it can be done during the catheter or requires a surgery. If it requires a surgery, whether is has to be it's own surgery or can be tagged onto the Fontan surgery.  There are a huge variety of possibilities of what they will find and because of that, we signed consent forms for 4 different procedures tomorrow- just to cover all options.

We are going into tomorrow with more hope in our hearts, with a greater chance of disappointment, but with many more options and possibilities. We are beyond astounded by today's echo. Even if we are disappointed tomorrow, today gave us a big reminder to believe in miracles and believe in the impossible. And most importantly to believe in the power of prayer.

Tehilla's catheter is scheduled for 1:00pm tomorrow. I will post a blog update when she is taken in. During that time, I would like to ask people to say Psalms 57, 58 and 75. Please pass her name around and ask that they do the same.

Tehilla bat Shoshana

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