No wiggle room….

I am quite bleary eyed and tired, but I want to catch everyone up so I will try to do my best to make this blog post coherent and spell things correctly, but I’m not making any promises. 🙂

So to make a long story short, the echo we had yesterday in London showed that Ava’s heart function is decreasing, which is sad and not a good thing at all.   They compared yesterday’s echo with the one we had done Feb 20 when we were in emerg and there is a noticeable difference.   Now, we still don’t know if there is decreased function from the echo we had at Sick Kids last week Tuesday, as the pictures have been sent but not analyzed yet, but any decrease in function is  just plain concerning.

And the trouble is that they just don’t know why this is happening.   Some baby’s do so well with their little single ventricle hearts, and some don’t and it’s not something they’ve been able to figure out.  I really wish they could.

But through all this our London cardiologist was very kind and asked me how I thought Ava was.  I personally am not super worried about Ava, but she is having more frequent  spells where she gets clammy and I’m also noticing that her breathing is faster more often and those things do have me concerned.  They don’t like the clammy spells either so  yesterday they hooked her up to a Holter monitor that recorded the electrical activity of the heart for 24 hours, to see if they can match up any heart irregularities with the clammy spells that she has.   Perhaps there is a simple arrhythmia problem which can fixed, who knows.

And since our cardiologist also was talking back and forth with Sick Kids yesterday, we got a call last night from Paula, our Nurse practitioner there, and she said that they wanted to see us on Tuesday in Toronto, and to pack our bags and be prepared to be admitted and stay for quite a while…. and I think this time they might mean it.

As Paula explained, Ava just doesn’t have any wiggle-room – meaning she just doesn’t have that reserve that we all have that allows us to fight things off, or deal with pain or stress.     Ava is just not that strong, even though she looks fantastic.     That’s what our cardiologist told the Dr at Sick Kids, that Ava looks great clinically, but her echo is saying otherwise.   Ava’s good healthy looks are apparently misleading.

So I’m packing my bags with a heavy heart.   I’m still praying that we won’t have to stay, but it seems the writing is on the wall this time.  But like Jason says,  it’s not easy having her home either – although we love being here together as a family – Ava is exhausting to care for and neither of us are getting much sleep.  So if the hospital is the best place for Ava, then it’s where she needs to be and maybe it will be better for us too in the long run.

So I’ll just pack and trust, and hope that they can figure Ava out and that we can get that wiggle room back!  Like always, we’ll keep you posted!

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9 thoughts on “No wiggle room….

  1. So sorry to hear this Lisa. My heart aches for you guys but we know that God is in control of it all and that He works all things together for good for those who love Him and are called according to His purpose. He knows what Ava needs and He is watching over her and the rest of you. She will get the care she needs and you will get some much needed rest too.
    Continuing to pray for you all!! You are loved.

  2. So sorry you need to go back to TO, Lisa. Praying for you and please know we are here if you need anything. xo “It is the LORD who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8

  3. Lisa and Jason. We are so sorry to hear you are heading back to the hospital again. Our thoughts and prayers are with you. Please let us know if there is anything we can do.

  4. I have a friend, Jennifer Andrews, that lost her HLHS, TS daughter, Brooklyn at 3 months at home. Heartbreaking. I am glad that they are being careful with Ava! Praying for you!

  5. Praying for you guys as you head to Toronto again. God knows exactly what Ava needs, and we’re praying he gives that wisdom to the dr’s.
    So awesome to see your faith being lived out so clearly on this journey!

  6. Poor Ava girl and so sorry Lisa that you have yet another hurdle but best to be cautious. Always thinking of you and your family. Stay strong, she has her mother’s genes, you will all make it through anything with God and your strength. Heroes in my eyes 😉

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