Wednesday, September 17, 2014

Cautiously Optimistic Appointment

We had our appointment with Dr. Golander, our cardiologist. Tehilla dazzled everyone with her cuteness and then eventually with her perfect set of lungs. As Dr. Golander said, "Well, I can say without a shadow of a doubt, she does not have vocal paralysis." She doesn't love having an echo done. She is usually well behaved until they go searching for her pulmonary arteries by her neck. That's when she screeches, rips off wires, and um, throws toy telephones at her doctors.  We'll work on her behavior, as she gets older.

Anyways, from the echo, Dr. Golander could see that her heart functionality looked very good. This is great. It shows us that the Enalapril has been helping her. There's no way to know about the pressures in her heart from an echo.

As far as her pulmonary arteries go- there was difficulty in the imaging. Translated to: she's a toddler and wouldn't hold still and there was only so much screeching and crying they would put everyone through.

Here is what they think they did see- although, be reminded that an echo on it's own, even with a completely sedated child, does not always show a clear picture of what is going on...

I am choosing my words carefully here. It appears that there was some growth in the middle of her pulmonary arteries. It appears that her pulmonary arteries are now 5 mm throughout. He could not get a good visual of her left side.

5 mm, is the barely bareable minimum for her to have her Glenn surgery. It is 'almost, just a smidge more' what they need.

I will add that I am skeptical about what we think we saw. This has nothing to do with confidence in our doctor, who clearly knows what he is doing. It's just hard to believe that her pulmonary arteries suddenly became uniform in size and grew a teeny weeny bit in one month. Especially since we have been waiting since March for growth. Especially because we thought she was Glennable and was proven wrong from her catheter last month.

Just my "unprofessional" mother's opinion.

So...

What this means is that right after the holidays, next month, after Sukkot (huh?) we will have another echo and appointment with Dr. Golander. Then, they believe that there is a real possibility of doing the Glenn. We will meet with Dr. Erez, our surgeon, and discuss if he feels that she is ready for the Glenn. We will also discuss if she should have another heart catheter, given the AV Block that she had last time.

Fingers crossed, prayers in our hearts and on our lips.

If it's not too much to ask, I would obnoxiously request, that during Rosh Hashana (what's that?) and Yom Kippur (another one?), you give Tehilla just a slight thought during your prayers. It is a time to ask for mercy and a time where life and death hangs in the balance. I feel uncomfortable asking, seeing as we are all going to be pouring our hearts out for our own families. But if it's possible for just a half a minute, I believe we could cause some kind of commotion in the heavens.

Tehilla bat Shoshana


6 comments:

  1. will be creating commotion on behalf of Tehilla. it will be more than a slight thought. I will be very assertive, I can assure you. sending hugs and chizuk!

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  2. We will daven up a storm for Tehilla on the yamim noraim!!!!! Reading this optimistic news just made my day :)

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  3. Asking people to pray is a wonderful thing to do - for them as well as for anyone they might pray for! Shana tova umetuka...

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  4. Shoshana, Tehilla, with all our combined prayers, and your such speciall caring, will have, B`H- a complete healing.

    All will go well. Amein.
    I will take this opportunity to wish you and all your family and extended family,
    A HAPPY NEW YEAR 5775.

    MAY YOU ALL BE BLESSED WITH ALL GOOD THINGS. AND ONLY GOOD NEWS. AMEIN.

    Hashem bless all of Klal Israel.

    s.

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  5. I will definitely be including Tehilla bat Shoshana in my tefilot. There is room for everyone. IY"H we will all have a chatima tova. L'Shana Tova to your whole family!

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  6. I'm sorry I didn't see this till now! The gates are not yet closed, and I will be davening hard! Hashem will hear our tefillos for little Tehilla! <3

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