I am so happy to report that Ava is doing much better today, praise God! I think that the stress of yesterday aged me about 10 years, it was that crazy. Last night we were so concerned we brought the kids in to visit Ava, so we could all be together as a family in case it was for the last time.
But Ava pulled through the night and has been much better today. And it’s strange timing, but as it turns out, the Critical care unit here at Sick Kids is full, and so even though Ava is technically in Critical Care right now, she is up on the 4th floor where we always have been, with all the nurses we know and love. The only difference is that she has one-to-one nursing care, and is being managed by the CCU dr’s instead of the 4th floor cardiac doctors.
We ended up in Critical care yesterday because when everyone realized how badly Ava was doing, they wanted to start her back on the IV heart meds right away. But the critical care team that had come up to assess Ava didn’t feel that it was safe to start an IV on the 4th floor because she was so unstable, so we had to go down to the Critical Care unit for her IV start. While we were there her colour went from bad to worse and if it hadn’t been for the heart meds and the oxygen they put her on I don’t think Ava would still be with us. So that’s when they decided to keep her in Critical Care, but moved her upstairs due to the lack of space.
And we were so happy to see that she did perk up today and probably would have improved more if the poor baby had been allowed to eat! But because she is so dependent on her heart meds now, they decided that she needed a picc line in case her IV fails (which they often do). But it’s the weekend, so things aren’t scheduled so she had to have an empty tummy starting from 6:00 am in case they were ready for her at 8:00 am. But we didn’t hear anything all morning and then finally just before 11 am they said it wasn’t going to happen today, so we got to feed her a little. But then they changed their minds and said they would do it, but it would be after 4:00 pm, so we stopped feeding her again at 1:00 pm and then she didn’t end up going for her picc until 6:00 pm! So we starved her all day, but thankfully as she was getting fluid through the IV she didn’t seem that hungry, and now as soon as she comes out of sedation we will start feeding her again.
This is one crazy and exhausting journey we are on with our little miss Ava. And I’m glad God has a plan, because for us it feels like trying to navigate rough water in a canoe in the dark, we don’t know where we are going. 🙂 And I was thinking yesterday that God knows what’s best for our family, but then I stopped and thought that I shouldn’t really think that way… because in my mind, the best thing for our family would be to be on vacation on a beach somewhere… haha. I rephrased it in my mind to say that I’m not sure what God is going to call us to endure before we are finished this Ava (earthly) journey. But again, no matter how difficult things get, God is providing the grace and peace to get through it all, and for that we are very thankful.
22 The steadfast love of the Lord never ceases;
his mercies never come to an end;
23 they are new every morning;
great is your faithfulness.