Wednesday, January 27, 2016

All is REALLY Not Well

There will probably be several posts as I digest what happened today.

Tehilla went for a cardiology appointment today. Before every cardiology appointment, Tehilla gets weighed, has her blood pressure taken, her oxygen saturation  and heart rate measured with a pulse ox. We then wait to be called in for an echo with an echo technician and our cardiologist.

Tehilla's oxygen level was great for her (83) and she even went up a few 100 gr. (11.4 kg = 25 lbs). But her blood pressure was extremely high. It was 134/81.

Tehilla takes 5 medications a day- 3 of which are to control her blood pressure. We have tried quite a number of them, and yet, her blood pressure still remains extremely high.

The moment Dr. Golander walked into the room, Tehilla burst into tears. Watching some Peppa Pig managed to calm her down enough to carry out the echo.

Tehilla has Systemic Hypertension. This is is high blood pressure in the systemic arteries. They have tried everything possible in the way of medications. This indicates that there may be something anatomically wrong. The echo showed a very slight narrowing in Tehilla's aorta. On the echo, it seems almost insignificant, however, given her high blood pressure, it may be an indication of a problem.

They need to do a heart catheter. They need to measure Tehilla's blood pressure from inside of her heart, while she is sedated, to have a real indication of what her blood pressure is. They also need to check if there is narrowing in the aorta.

Her aorta was repaired and expanded during her first Norwood surgery. It could be that that area of the aorta is narrowing now. Here is Dr. Golander's sketch. The top left picture is the aorta after the Norwood procedure. The top right picture is what her aorta should look like. The bottom right picture is the narrowing that they suspect.

If during the heart catheter, they find a very small area where her aorta is bottle necking, then they will do a balloon dilation procedure. This is when they inflate a balloon from inside of her aorta and dilate the aorta.

If during the heart catheter, they find that a bigger area of her aorta is narrow, then she will need heart surgery. She will need an aortic valve repair.

This procedure or surgery must take place and her blood pressure must be under control before they can begin to discuss her Fontan surgery, the last surgery for the reconstruction of her heart.

Her heart catheter is scheduled for March 28th. We will be admitted the day before for blood work. 

I've been asked to buy an electric blood pressure machine and to make sure to meausure her blood pressure once a week. As well her Amlodipine dosage has been raised.

Here is a helpful infographic that illustrates the difference between a normal heart and a heart with HLHS, and the 3 key procedures in the staged reconstruction of Tehilla's heart. Tehilla has already had an additional surgery before her Glenn.

Now is the time to start circulating Tehilla's name for prayers again. I will post more later on.

Tehilla bat Shoshana


  1. Shoshana, life is a journey -- a series of tests just as Avraham Aveinu was tested. I do not know what the future holds for Tehilla, or for you, your husband or your two beautiful other children. I have come to know had love Tehilla through your amazing posts about this stubborn, willful, funny, sweet child of HaShem and want her to live a long life, perhaps even marry and have children of her own some day. In G-d all things are possible. . . Just know that the prayers and thoughts of so many around the world are with you. G-d listens to prayers. Tehilla is already a heart warrior, a little princess -- a miracle child. B"H she will continue to be one.

  2. To the above comment, my response..
    You said it all so beautifully..

    i just add..with my heart...

    Amen and Amen.

  3. "For I the Lord am your God, Who grasped your right hand, Who say to you: Have no fear, I will be your help." Is.41:13 So be it, Tehilla bat Shoshana