A recap of days 49, 50, 51 & 52 in the PICU:
Sunday and Monday were pretty quiet around here. The phrase of the week has been "keeping things in a holding pattern" as we await to see what Edmonton had to say. On Sunday, I got to hold her for a few hours, and as my Facebook friends read, Evanna smiled at us for the first time in 7 weeks on Monday! It was such a tender moment for Nick and I, as we got a glimpse of the old Evanna and see our happy baby girl.
Tuesday was the big day, as we finally got to hear what the medical team in Edmonton wanted to do in regards to her heart and respiratory problems. It was an unanimous decision that a Cath needed to be done sooner rather then later to get a full picture of her heart and possibly see what could be done about the collaterals on the left side. Things "seemed" to be a bit more positive from that aspect, but I'm still consciously aware of our reality and that we may not hear things we will necessarily like.
The thing up for debate is whether or not another kind of surgery will be beneficial for Evanna. They're wondering if maybe her aorta is slightly compressing on her trachea, making the Tracheomalacia worse. It's a procedure we won't necessarily see immediate results, and EVERY surgery comes with its risks and benefits. Evanna is still getting a trach, but this procedure could help things in the long term in that she may not need it for as long. It's called an aortapexy, and basically they would go in and "pin" her aorta to the sternum to lift it off her trachea. So while they do her Cath, the ENT specialist will go in and do another bronchoscopy to see if he can see anything that might be pressing on her trachea making the Tracheomalacia worse.
So for the next week, we are continuing with this "holding pattern" in keeping her stable and happy until the transfer back up to Edmonton (this will be her 3rd plane ride) next week for her Cath and bronchoscopy. If they decide to go ahead with the aortapexy, we could be in Edmonton for another month, and then back down to Calgary for the tracheostomy.
I've come to the realization that hospital life will be my reality for quite sometime, and because of that, I've been handling hospital life a lot better and not being so emotional when it comes to thinking how long we've been in the hospital, and how much longer we have yet to go. Going back to Edmonton is very bittersweet because we already know the team up there, and I'm actually excited to see some our favourite intentivists again. It definitely sucks that I have to pack again, and relocate to another city, but we have resources in place that make the blow a little less hard (our names are on the Ronald McDonald waiting list and it'll be good to see everyone again).
At this point Evanna is having a good day, and I even got some smiles again today! I am asking that for everyone willing and able, to join us in fasting for Evanna this Sunday. Next week is a very big week with lots of important tests and discussions happening, and we need all the prayers we can get. So prayers, prayer circles/lists, good thoughts, whatever you do to get through a hard time are welcome and appreciated.
Thank you from the bottom of our hearts and Evanna's special heart,
xo The Irvine Family
// This stunning pink headwrap was made by @noxxaz (an Etsy shop) and graciously gifted to us by Instagram follower @margaret_font
xxoo Thank you so much! Again the generosity and kindness bestowed upon our family during this time has truly been overwhelming in the best way possible!