When you constantly think about something for years, it almost hard to let reality sink in and grasp it’s no longer just a dream. I actually can recall a conversation I had with one of our favourite intensivists (Dr. Aditia) at the Stollery back when Evanna was still intubated and probably about 6-7 months old (January 2015) about Dr. Hanley, his reputation and extensive experience with Evanna’s type of heart defect. Dr. Aditia (and his wonderful wife who’s a well-known cardiologist) is actually from the San Francisco area (well, lived there for a time), and use to work alongside Dr. Hanley and expressed back then that it was well within our rights to seek out and consult with Dr. Hanley if Nick and I really wanted too. At the time, we were still dealing with just trying to extubate Evanna off the hospital ventilator and get her home (and completely unaware what laid ahead and how long that would truly take), and so while it wasn’t a priority at that time, I kept this in the back of my mind to look into and research further later on down the road. Finally, after discharging home following 400 days in hospital, we decided to just take a break, let Evanna recover and see what she would do on her own -- and go from there. Much to our medical teams surprise, Evanna did indeed get more stable and stronger over the course of that first year home (2016), but at the same time, I couldn’t ignore this plateau we had also hit in other areas. Sure things have remained very stable and we’ve largely remained out of hospital... but it was becoming a bit disheartening that we weren't able to wean her off oxygen whatsoever, and what her quality of life would look like moving forward was really weighing heavy on me as a mother.
So after a year of being patient and waiting to see if Evanna would improve on her own, I decided enough was enough, and as I stated before – “put my advocating mama pants” back on and seek an official opinion from Dr. Hanley in regards to Evanna. Dr. Hanley is extremely well known in the MAPCA (heck, CHD) world, and felt that if there was going to be one person that could potentially help her and provide us with a decent option – it was going to be him. Thankfully when I brought the topic up and discussed the issue up with our primary cardiologist at a cardiology checkup we had back in September 2016, she immediately agreed that this was a very appropriate "next step" and was completely on board with aiding in this referral.
However, while I knew there’d be a few hoops to jump through -- as we’re dealing with a completely different healthcare system, country and have so many logistics to factor in, there have definitely been some major and unexpected roadblocks that prolonged this process, and it’s been quite exhausting to say the least.
The past year has been a mix of hope and dread. In the first few weeks following my request to send Evanna’s medical records down to Dr. Hanley, I kind of kept seeing “signs”, like a billboard advertising flights and vacations to California on my way home, or constant popup ads on my computer promoting the same thing (ie. California) the night I wrote this blogpost where I first publicly revealed our plans for this referral. I really tried hard to not read too much into "these signs" (as I'm not generally into that sort of thing lol), but I still noticed them. I then had so many people comment and send me personal messages of their experiences of also running out of options (and being turned away from multiple cardiac centers), and yet have their case accepted by Dr. Hanley and everything going so well.
However, as time went on, and the obstacles began popping up, it kind of chipped away at that hope and I began wondering if I was doing all this work and advocating for nothing. The cardiac cath that we did in June didn’t help the situation, and I truly began preparing myself that Dr. Hanley was indeed going to come back and tell us “no”. Heck, I even began thinking up Plan B – which was to proceed with another cardiac cath that would actually be "interventional" sometime next Spring/Summer, as Dr. S (Stollery cath doctor) had indicated that her right side was in major need of some ballooning (and maybe even stents), but didn't want to do anything during that particular cath in case Dr. Hanley accepted our case and could better fix things via open heart surgery.
But here we are, and I’m just trying to come back down to Earth and decrease all this adrenaline/anxiety that I can still feel running through my body and not put myself into early labour lol. I know the hot temperatures haven’t necessarily been helping, but I’ve definitely been having a hard time turning my brain off a getting a decent night’s sleep this past week (and I generally sleep like a rock!), and I'm constantly having to stop and literally tell myself to relax and take deep breaths several times a day.
I'm trying my best to organize all my thoughts, and slowly put down on paper what we need to accomplish over the next several months (like a passport for baby brother!!) to ensure everything will go as smoothly as possible. Everything from how we're getting Evanna down there (though, this decision will have to be made in part with our medical team), submitting a referral to the Ronald McDonald House in Palo Alto, to securing a car rental (as I'm 99.9% sure we'll be flying down there), and what we need to bring with us! Unlike before, if we happened to forget something back in Calgary while we were in Edmonton, I could easily wait for the next time Nick came up to bring it to me, but definitely won't have that luxury this time around!
Due to timing, there are actually a few things already working in our favour and definitely can't ignore these incredible tender mercies and blessings. One of the biggest is I will currently be on maternity leave during this time (at this moment, my last day of work scheduled for November 23rd and with the vacation time I've built up over the past year, aim to have my LOA start on December 8th), and so I won't have to worry about getting time off work and will be receiving EI for that 12 month period. While I'm interested to see how everything lines up, Nick already has vacation time scheduled for sometime in February (but I know they may push for a March surgery date) and specifically set aside and reserved additional vacation time for this exact scenario when he submitted his vacation request last March (I also wouldn't be surprised if they let Nick switch around that February vacation time if need be too). Regardless of when we actually GO, I know Nick getting time off work won't be an issue, as he's been very open and communicated this referral to Stanford Children's Hospital to his supervisors from the very beginning, and we've been blessed with the most incredible support from both management and his EMS colleges since Evanna was born.
Thank you so much for the outpouring of incredible support over the past few days. I've actually received a number of messages from individuals who live in the Palo Alto area with offers of help should we need any, and continue to be blown away with the impact she continues to make and the hearts she has touched.
xo The Irvine Family
PS. I promise to keep the blog updated every step of the way as we make the proper arrangements and get everything in order. The logistics it takes to go to the Stollery/Edmonton is always a little overwhelming at times -- so this is all just a little daunting to say the least!