Monday, April 13, 2015

Waiting for 3rd Open Heart Surgery

I've been going from being into total shock, to my regular ICU mom on autopilot, and then to sobbing on repeat for the last 48 hours when I think of our situation. All I kept saying to the intentivists for the last several weeks is that though I knew we were still going to be in the ICU, I was hoping to at least be in Calgary and for Evanna to be awake and alert for her birthday. Dr. Rebeyka and all the intentivists were optimistic and agreed that my wishes were achievable and we had been on complete cruise control headed towards Calgary just a few days ago. Evanna was handling NG feeds very well, she was on incredibly low ventilator settings, and she was looking the best we had ever seen her since her first open heart surgery. 
Moments before Dr. Guerra called me in Calgary, I was just telling friends that I was planning on only packing about a week's worth of clothes for Edmonton, as the Stollery was going to call Calgary on Monday (today) to secure a bed in the PICU at the Alberta Children's Hospital and arrange for a transfer on either Tuesday or Wednesday.

My life is a mixture of very little control of where I "live" and I am pretty limited on what I can do on a day-to-day basis. This has been going on for so long, and so I am just growing a little exhausted of our predicament. Of course I am willing to stay in Edmonton for as long as possible for the sake of Evanna - because at the end of the day, that is all that MATTERS. Evanna's health, well-being and life is really is what is most important, and so though it is less than ideal for me, I will do whatever I have to, to make sure Evanna receives the best care possible. I do miss my best friends, the get-togethers with them and our family. I miss celebrating the holidays and birthdays and just the relatively normal social life that I use to take for granted.

As for the latest news: right after I posted yesterday's update, Dr. Ryerson took Evanna off of “ECMO Alert”, as she felt Evanna was more stable and didn't require the alert anymore. Evanna spiked another temperature, and a staph infection from her trach came back positive, so they switched up her antibiotics and started her on some new ones.
They did start her on TPA yesterday (it's a "clot busting" drug) to get her valve to somewhat work again, because they are trying to do whatever they can to keep Evanna stable and tide her over until next week. They were originally going to do 6 hours of TPA, but just before we hit the 6 hour mark, a tech showed up to do an ECHO, and when we took the blanket off of Evanna, she was soaked in blood, as an earlier poke site began that to bleed out. Dr. Ryerson ordered for the TPA to be stopped immediately, and thankfully the ECHO revealed that one of her leaflets was working again and so they decided to just keep the TPA off in the meantime.
Blood gas tests showed that her hemoglobin was low (which wasn't unexpected), and so they decided to give Evanna a transfusion. Finally about 8pm, things really began to settle out, and so I left to unpack my car and bring all my belongings back into the Ronald McDonald House. 

Today has been somewhat of a calm day, which has been nice. The unit has been incredibly busy with other patients requiring the intentivists attention, but they check in every so often to make sure Evanna's mechanical valve is still clicking and that she is doing alright. We found out that Dr. Rebeyka will for sure be back on Monday, and we're just waiting to see when they will actually schedule a surgery to replace that valve. Not too many details have been discussed as to what kind of valve they may replace it with, but they kind of want to wait until Dr. Rebeyka is back, as those discussions are more appropriate to be between myself, Nick and Dr. Rebeyka.
I'm hoping we'll have a better idea as to a surgery date by tomorrow, but my best guess is it'll be either Monday or Tuesday. 

I’ve also been joking with some of staff that Evanna just wanted to celebrate her birthday here in Edmonton with her friends, which are all the nurses, RTs and intentivists in the PCICU at the Stollery Children’s Hospital. I’ve already talked to “Child Life” about making appropriate plans for Evanna’s birthday in the PCICU, and once we figure out a surgery date and when most of our immediate family is free, we’ll make more concrete plans.

Anyways, if I could ask for specific prayers, it'll be that Evanna continues to remain stable until next week and will be strong and well going into surgery (fyi - this will be her 7th surgery in 6 month).

xo The Irvine Family


  1. I've been following your family for a few months now (IG and blog) and I can't even imagine what you are going through. Prayers definitely headed your way for all three of you, as well as for the doctors and surgeon.

    You had mentioned in your previous post about g-tube possibilities. My son was born a month early and surprised us with a cleft lip and palate last August. We spent only three weeks in the NICU and while he was super small (less than 4 pounds), he was relatively healthy. He just had a hard time eating with the cleft and to get us home, they gave us the option of a g-tube. While we are older first-time parents (31 & 34) and educated, we had our sights set on home and jumped to it. Not to mention our brand new baby kept pulling the ng-tube out and it was a huge stress. G-tubes are a blessing but also a curse. They leak. They require lots of pieces to do the feeding and home health in the US can be a huge annoyance in getting those parts. They cause a lot of gas and reflux. There are issues with the stoma getting sores. My son is now full bottle fed and has his next round of surgeries next month so we will soon be able to have it taken out permanently. I think you guys are really smart to not jump right into a g-tube. If you do end up going that route in the future, just know that it is easy to take care of and change out and it's nice to sit in the back seat and feed your child through the tube while your spouse drives :) There are pros to the g-tube but research it all out first.

    Best of luck.
    The Garbers in Wyoming, USA

  2. I have been reading your updates on sweet Evanna for a while now and we think about her everyday. We are in Edmonton and my son has a CHD. He has spent a total of four months in hospital having 5 surgeries. You have had such a rollercoaster ride and we are hoping they can figure out what to do about her valve and you can get back to Calgary. I can't even imagine how difficult it would be t o be so far from home.