July 1st

It’s July the 1st and so I will say Happy Canada Day!    We live in a great country, and as you can imagine I am very grateful for our Country today… a country where we get amazing health-care without every having to worry about paying for it out-of-pocket.   And Sick Kids is a pretty amazing place and I’m proud that it’s Canadian too.  🙂

And today Sick Kids put on a Canada Day carnival for the kids, with some food and games and prizes and the kids quite enjoyed it.   I was glad the kids and Jason could come to me, because I spent the entire day at the hospital with Ava.   When I got there this morning Ava seemed really tired after having a quick cuddle with me, even though she had just been awake for an hour.  So we tried to put her down again with her CPAP on, but she just didn’t want to settle – and her heart rate kept rising.   And then of course, as always, just when you think you have your baby settled… the woman from the phlebotomy (blood-work) team shows up to take some blood from your almost sleeping baby who doesn’t feel well.   You can imagine how I felt.  So I felt that, plus I knew that getting poked in her arm would send her heart-rate through the roof and it was already high and that worried me.  But since Ava had already been given Tylenol and Advil and the blood-work had to get done, she got poked and her heart-rate did go up, but we gave her some morphine on top of everything and were able to get her settled, thankfully.

Except then we realized then that she felt very warm, and when we took her temp we saw that she had spiked a fever of 39 degrees.  Poor baby.  So we put some ice on her head and got her undressed and she finally fell asleep.       She has been having fevers again the past few days, so they have started her back up on antibiotics in case of infection.   And her blood-work shows that her white blood cell count is a bit high, so it would seem that she is fighting something, again.  Just like a week and a half ago when she had to go down to critical care.  I wish I knew what on earth was going on with her.   But I think part of the problem is that because Ava’s heart is so bad, even the smallest infection is going to wreak havoc on her.   And that makes us all worried because Ava is not really in a position to fight anything off right now.  She could really use a week or two of being well to help get some reserve back.    I am pretty thankful for her CPAP though, because once she does fall asleep on it, her heart-rate and respiratory rate goes down significantly and I know it helps her and makes her feel better.   I won’t be happy if she needs to be on it more than she can be off of it.  But I guess we will just wait and see.

She did have some smiles for daddy and the kids when she woke up from her 7 hour nap later this afternoon, so it was so nice to see her happy.  But again, it didn’t last long, and she quicly became tired and her temp started going up again and so we quickly bundled her off to bed.  So we will see what tomorrow brings for our sweet Birdy.

So here is to a new month that hopefully will bring a new heart for Ava and our friends who are also waiting for hearts… Aleeda our little friend here with us in Toronto, and a friend that we’ve been praying for in the US – Sofia – who also has hypo-plastic left heart and Turner’s Syndrome just like Ava.    We all can tell you that waiting for a new heart while watching your child’s health deteriorate is not an easy journey to be on, but we all believe that by God’s grace we will get through this, one day at a time!!!

3 thoughts on “July 1st

  1. Hi All,
    I don’t know if you remember us! Back in December just after Ava was born we meet at RMH in the laundry room. We have a 3 year old little boy named Isaiah how has hypoplastic left heart syndrome like Ava. He had just finished his last surgery the fontan. I was shocked when our friends Lisa and Jon had meet you guys! I wasn’t so happy to hear that Ava wasn’t doing so good! 😦 Through all that we have been through I always say that it all happens for a reason and God has a plan! We just have to trust that he will get us through whatever the situation. He hasn’t let us down yet and there has been good times and bad times. I’m proud to say that now is a good time!!:) I only wish that the good times will come to you soon! We are praying for you and the whole family!

    Love from Paradise, Newfoundland
    Daina, Gary, and Isaiah Porter

    • Oh Daina, it’s so wonderful to hear from you! And we do remember you and were talking about you the other day. We remember Isaiah because he was so darn cute and such an inspiration to us. We are so happy to hear from you and happy that things are going well, and happy to find out you are believers… how wonderful. Please keep in touch!!!

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