There and back

So yesterday we made the trek to Toronto again.  Except this time it was Ava and I and Jason’s sister Lija (Lija – the cool Latvian way to spell ‘Leah’ ) and we left Jason and the kids at home.  It worked out better that way so Jason could be in town for Sarah.  Plus, Jason is the morning king.  He wakes up at 6 am every day to give Ava her 6:00 am feed, he then gets the kids out of bed,  feeds them, packs their lunches and walks them to the school bus.  Every day.  He rocks.

Maybe someday I will venture to Toronto alone with Ava, but at this point I’m too tired to drive myself, plus I  enjoy the company and the help of having another person there with me.   So thank you Lija for taking the time off of work and taking us!  And we had a great day together and Lija was very good about me dragging her all over the hospital and talking to what seemed like a million people, she is a very patient person.

And the good news is that the Toronto team was very happy with Ava.  Every time they see her in clinic they remark that they’ve never seen her looking so good and it makes me so happy and grateful to God for His goodness.  And I’m happy to report she’s gaining weight and growing, which is fabulous.  She’s only in the 3rd percentile for weight, but for her height she right around the 15th percentile.   It’s a little surprising that she is a good height considering she has Turner’s, but we’ll gladly take it!    And her echo looked good as well.  It’s funny though because they couldn’t get a good look at Ava’s shunt during the echo, and the tech even had a doctor come and try…  and I came very close to offering to show them how I’ve seen other tech’s do it, but I refrained.   I’m positive I could do it, but if I couldn’t I would feel very silly. 🙂

Now, the cardiologist that is part of the Single Ventricle Team we saw yesterday was a bit pessimistic.   He didn’t think Ava’s heart function had gotten worse, but he mentioned that it hadn’t gotten better either.  I was surprised that they hoped it would get better and asked him if they really expected that,  and he just said that a few kid’s hearts do.   He also threw out the word ‘transplant’ which I found a bit strange as we are nowhere near having to think about a heart transplant for Ava at this point.   I know that for single-ventricle kids, a transplant is often the reality, but according to the Children’s hospital of Philadelphia, there are thousands of people in the 20’s and 30’s living with single ventricle hearts, which is amazing news, although even then they often have to deal with other health problems.   Thankfully Ava’s cardiologist –   Dr. Jaeggi – also came by yesterday and he was much more optimistic and pleased her with echo results, which was reassuring.

And so walking away from that appointment I felt that over-all,  things were positive.  And we don’t have to go back to Toronto until April 23 for Ava’s pre-cath appointment.  Her heart catheterization is on the 25th of April and the dr did say that if the catheterization went well and they feel that the pressures in Ava’s heart are low enough,  and she is strong enough to with-stand surgery, that booking her next surgery in May might be an option.   That would be amazing!  And they also said that no matter what happens with Ava’s heart, she will be so much better off after the Glenn Surgery  (You can read more about all three of the surgery’s here) and it will just be wonderful to have it done before summer.

So that was our Toronto trip yesterday.  We left at 6:00 am and returned at 6:40 at night, a long day, but a good day and it’s so good to know we don’t have it do it again for a whole month.  And I’m always greatful when we can go there, and then turn around and come back.

Amen. 🙂

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3 thoughts on “There and back

  1. Ava’s pressures are going to be low in that Cath! I just know it!!! I’ll be praying for your butterfly. Our girlies are rare miracles. Maybe someday they will meet! 😉

  2. I am so happy that your little “Birdy” is doing so well! I am so glad that you went there and especially back! God is good! Lifting you and your little Ava up in prayer now that all will go well for the next procedure in May. Hugs! Cheryl

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