....I don't know why, but I had a lot of trouble finding the time and motivation to formally write/summarize our trip up to Edmonton for Evanna's cath that happened back in the middle of June and just little surprised its taken me almost a month to get it up here on the blog. While I still kept everyone updated through my Instagram and our Facebook page, I guess due to the fact that the whole situation/referral is still very up in the air at the moment (ie. we are still waiting for an answer... the referral status is discussed further below), the lack of additional information made it feel pointless and a bit mundane to blog about it. However, documenting this journey remains a huge priority for me, so here goes ---
Despite how much planning went our Cardiac Cath procedure, I still feel like that week was a bit of a whirlwind/roller-coaster, but I'm just so happy to have this step behind us now. Not everything went exactly as planned (though, I'm very happy with how it all played out), and due to contracting a little GI bug from the hospital.....recovery took a little longer than expected. I feel like we're still trying to process all the information we got from Evanna's cath, and at the same time disappointed that things still remain a huge question mark until Dr. Hanley reviews the cardiac cath and sends us his official opinion. Though we knew what he was looking for, things weren't exactly as black + white as I hoped they would have been, and both our medical team in Edmonton and Calgary are very interested and eager to see what Dr. Hanley says. While things don't look too great (especially on Evanna's left side), Dr. Hanley is known for saying yes when everyone else says no, and we're somewhat in this weird grey area and basically left wondering how this is all going to play out. The cath doctor (Dr. S) stated that based on what he saw, "most cardiovascular surgeons in the world wouldn't touch her", and asked that he be kept in the loop in regards to what Dr. Hanley's says, as it would be very intriguing if he can do something based on what he saw during the Cath.
June 13, 2017
||| stollery, day 1 ||| we got confirmation at 10 this morning that we indeed had a bed, and were on the road towards Edmonton just 30 minutes later. The drive went really well, and Evanna only got a little antsy/grouchy towards the end (normal toddler behaviour in my opinion lol). We are now admitted and settled on the ICE unit ("intermediate care environment"), as her trach requires higher observation that the regular rooms can't provide.
We met with the doctor this afternoon who will be performing the cardiac cath tomorrow (Dr. S), and confirmed that they will indeed be going through her liver and the overall goals of this procedure (imaging for Dr. Hanley, check lung pressures and do ballooning of any collaterals if they can). He also made a comment that he has heard a LOT about Miss Evanna (he's somewhat "newer" to the Stollery, and so this is our first time meeting him), and apparently is well aware of her reputation.... 😳My only disappointment is that we're currently slated for 3rd case tomorrow, which means there is a small possibility we could be bumped (however, our nurse reassured me they've taken cases as late as 5pm), and she'll have to be NPO (no food) during the day vs while sleeping.
PCICU has been made aware of our admission (actually ran into a favourite intensivist of ours while grabbing a grilled cheese sandwich -- my favourite thing to eat here), but have high hopes that she won't need to go to the ICU after and can just return to the ICE room postop — where we'll stay overnight for monitoring (followed by blood work the next morning to check some liver numbers).
June 14, 2017
||| stollery, day 2 ||| well, at 4pm we were informed that Evanna's cath was indeed being cancelled/postponed, as the first 2 cases took too long. We're completely bummed.... but knew this was also a possibility, and are just waiting to hear what the new plan will be.
This is by far the healthiest and strongest Evanna has ever been while inpatient at the Stollery, which means we got to be a little adventurous and try some new things like ride a tricycle this morning while trying to pass the time (stuff that I could only dream of just 2 years ago). It's been a super long day of waiting, and despite being NPO (no food or fluids) since 7am, Evanna was such a champ about it. Seriously, this girl has been through so much in her little life, yet remains so happy, calm and content with everything, and I couldn't be more proud to call her mine.
UPDATE: we're now scheduled to be FIRST case tomorrow 🎉🎉 (which if I'm going to be honest, would prefer over being last case today)
June 15, 2017
||| stollery, day 3 ||| well, the moment we've been waiting for since October/November is FINALLY here! We know Evanna is in great hands (with the same AWESOME anesthesiologist she had back in December for that tough PICC line insertion), but remain anxious and nervous about what kind of results we're going to receive after. Staff were taken back by her easygoing nature while transferring her over to the procedure bed and laughed when she fought the sleeping gas and sat up for as long as she could to watch Tangled on the tablet (which obviously didn't last long).
||| stollery, day 3 part 2 ||| Evanna was in the Cath Lab for roughly 5 hours – and considering this was just a "diagnostic cath" (ie. no ballooning or stents placed), it was definitely a tad on the longer side, as they encountered some trouble trying to access the left side. Unfortunately Evanna's history and extremely high tolerance of sedation medication caused a few minor issues towards the end, which meant we had to make a little pit stop to the PCICU for about 5 hours before we could go back upstairs to our room. While Evanna handles anesthetic beautifully – she metabolises through it insanely quick, and so they had to throw a LOT at her, including a paralytic towards the end, which meant it was safer to recover under the close eye of the ICU.
So cath results - overall, there weren't any major changes and everything essentially remains the same as her last cath from 2 years ago. Good news is her lung pressures remain favourable, which means there are no contradictions for a potential future surgery. However, there is still a huge question mark in whether there is anything to rehabilitate in regards to her MAPCA's/collaterals, and Dr. S remarked that most cardiac surgeons in the world wouldn't touch her. He's aware of Dr. Hanley and his reputation, and basically reiterated what our cardiologists have said -- that if anyone can help Evanna, it'll be him. So now it's just another waiting game of sending down these cath results to California and seeing what he says.
The plan is to rest easy tonight (we just got back up to ICE), do some blood work in the morning, go over the cath results again with Dr. S in the morning, discharge, and drive back to Calgary. Thanks for all the love + prayers!
June 16, 2017
||| stollery, day 4 ||| and we're DISCHARGED 🎉🎉 After an xray to check the "plugs" they inserted into her liver after the cath, some blood work, and a final chat with Dr. S, – we were told we could take our little girl home with instructions to follow up with a cardiologist next week.
For the most part Evanna is doing well, and we're just dealing with some post-anesthesic nausea right now.
So why is everything still so unknown? Well, from how it was explained to us (and will ensure that Nick has everything clarified at Evanna's cardiology appointment on the 20th), though it was straight forward that Evanna's right side is in need of some ballooning and possible stenting... it's the left side that remains the big question mark (which we kind of already knew...and the sole purpose of this referral). Evanna essentially has no pulmonary blood flow to her left side and relies completely on her right lung to oxygenate her blood. The left side does receive what's called "back flow" and is fed blood through little collaterals that run along her ribcage -- which is basically what keeps the left lung tissue alive and well.... but it just means the left lung doesn't really do what a lung is suppose to do. Dr. S (the cath doctor) believes there may be some pulmonary fed collaterals just past her hilum (the point at which the bronchi, pulmonary arteries and veins enter the lung), which is what everything will comes down to. Most cardiothoracic surgeons won't go into/touch lung tissue, but it's kind of what Dr. Hanley is KNOWN for (particularly around the hilum). So it's seriously anyone's guess as to what Dr. Hanley thinks he can do (IF anything at all!) once he reviews these cath images.
This is kind of where things are getting a little frustrating (again), and the somewhat small consequence of our universal healthcare system when things are stable and the situation isn't necessarily considered urgent. For some reason (that was blamed on technology issues), our cardiologist/cardiology clinic didn't even receive the cath package from the Stollery/Edmonton until just last Wednesday (July 5th)....... and to my knowledge, it was hopefully forwarded to Dr. Hanley within the last few days.
So though I was hoping we'd have an answer by the time we saw our Cardiologist on July 20th, we definitely won't have an answer until at least the very end of July, if not the beginning of August. Trust me, if that news frustrates you, you can just imagine how Nick and I currently feel.
I'm trying my best to remind myself that good things come to those who wait and that everything will work out the way it's suppose to. Evanna is continuing to do well, and I would much rather deal with all this waiting because she's doing so well, then have the opposite problem right now. We feel beyond blessed and so thankful that we do have time on our side, and are focusing on that fact instead. Between my pregnancy and weaning Evanna off the ventilator (which continues to go well), we remain quite busy and distracted, and so we aren't really dwelling on this delay... except calling the cardiology clinic every week to ask for an update lol (always a tough balance of not being "that annoying mom" and properly advocating for things to happen in a timely manner).
[JUNE + JULY HAPPENINGS]
Not only have we been kept distracted by my pregnancy and weaning Evanna off the ventilator (which currently involves monthly appointments to the Respirology clinic), our social calendar has somewhat remained quite full too! The weekend before Evanna's cath, Nick and I actually went away for two nights with our friends to a cabin in Golden, BC, and we left Evanna in the care of our homecare nursing team. We enjoyed a nice relaxing weekend surrounded by the beautiful rocky mountains, and definitely hope to make it an annual trip (and crossing our fingers that Evanna will be able to come with us next year). The weekend following the cath, Nick and I attended a wedding at the Calgary Zoo (so BEAUTIFUL btw) of his old EMS partner, and had lots of fun with tons of Nick's colleges (it was a very EMS filled wedding due to the fact the bride is an EMT and the groom is a Paramedic that both work on the same shift), and we agreed it was hands down one of the best weddings we've ever been too.
Just after Father's Day, we unexpectedly got a phone called from our ENT's office, and were asked if we wouldn't mind doing our yearly "combined clinic" (an appointment with both our ENT and one of the trach respirologist) at the end of June vs September. Apparently they had a ton of cancellations, and were trying to fill some spots (why are some specialists easier to see than others?!). Well, the appointment was night and day compared to last years, and the mood was definitely much happier to say the least. Last September, we were at this huge plateau in regards to Evanna's respiratory status, and I was having a really hard time with the fact that we had made absolutely no improvement nor gains towards weaning Evanna's very high ventilator settings or sprinting since bringing her home. I was met with "well it is what it is" type attitude from the ENT, and told we just had to be more patient. Yeah.... was definitely not happy with that answer and even got a little emotional during the appointment.
This time, it was a much more positive visit with the ENT, who was extremely happy to see that her bronchoscopy results were showing her tracheomalacia is essentially gone, and we're making awesome progress with sprinting off the ventilator. I didn't really have anything to discuss, as we're on a pretty steady path with weans and sprints, and there's not much more to talk about (ie. decannulation) until Evanna is completely weaned off the ventilator. Overall, the whole team was happy to see the major improvements Evanna has made since last Fall, and will continue to keep tabs on her (especially if we end up going to California).
We enjoyed a busy, but fun Canada Day long weekend with the additional bonus that Nick was home for almost all of it. We first attended an event at the Foothills Stake Centre, as they put on a huge annual Canada Day event every year (apparently the mayor attended last year), and were able to catch up with quite a few old acquaintances. After that (and a tiny cat nap for this preggo), we headed out to Okotoks and had a picnic at the splash park. Evanna wasn't really a fan of the splash pad part, but that's not going to stop me from trying to continue to introduce Evanna to new experiences. We were able to do both of these activities (event and splash pad) with Evanna sprinting and left the ventilator in the back of our car -- something I can't emphasize enough just how liberating that was. The evening was concluded with a quick BBQ at my parents house and one tired little girl.
We entertained Nick's family at our house the following day, and ended the weekend with a family photo session with my friend Alissa of Lissables Photography.
Nick's birthday was this past weekend, but due to insisting that we keep everything extremely low key, just had one of the homecare nurses come over early to watch Evanna so we could go for a simple and quick dinner (next year is his 30th....which means that same request will most likely be disregarded).
Next week we have our detailed ultrasound where we hopefully find out baby #2's gender, which means we can finally start discussing names (Nick refuses to discuss baby names until then, as why have two arguments, when it just requires one? lol) and have invited some friends and family over later that night so we can reveal the news together.
xo The Irvine Family
PS. if you haven't already listened to it, I did a 15 minute podcast interview with the Orange Socks Organization that was released the day we publicly announced we were pregnant with baby #2! I briefly talk about when we received the news of Evanna's diagnosis, the impact it's had on our lives, how she's been doing, and what the future currently holds for our family. It basically sums up our journey thus far and shows that despite the last few years being incredibly hard and full of trials, things are looking up and we actually have a lot to be thankful for!
Link to the interview HERE (it's about 15 minutes long).