|| NEW SURGERY DATE + NEWS FROM CALIFORNIA ||

This month has been one big holding pattern (what else is new?), and the planner in me is teetering on the restless end to say the least. Evanna’s open heart surgery (OHS) was originally booked for November 23rd (with a transfer via the ICU transport team occurring on Monday the 21st), but Nick and I both received several phone calls somewhat “last minute” the Friday before, alerting us that Evanna’s surgery was indeed going to be bumped. While the bump caused the obvious headaches (work, homecare arrangements and continued logistical issues with IV meds and cardiac monitoring), we actually were somewhat okay/not surprised by it and did what we normally do – continue to go with the flow. It was initially implied that the surgery would just be rescheduled for the following week but it actually got put off even longer than we had originally anticipated:

[DECEMBER 8]

Apparently our surgeon did have some OR time before that date, but he is heading out of town for a few days, and did NOT want to do Evanna’s surgery just before going to the airport. That’s right – girlfriend has gotten herself quite the reputation, and so because of that, he wants to wait until he gets back before doing Evanna’s surgery so he’s around “just in case”. I still haven’t decided whether to chuckle, be thankful for the thoughtfulness/extra precautions, or annoyed at this whole scenario (a combination of all 3 perhaps?? lol), but it is what it is, and we’re already just over a week away from this date, so at this point it doesn’t really matter anymore. I know there is a small chance we could get bumped again, but we don’t think it will happen due to how much this is already being put off and a vegetation on Evanna’s valve was clearly seen (indicating her valve is definitely infected and needs to come out asap) on our ECHO last Friday.

We’re still making a few final tweaks in regards to the transfer piece, but that should hopefully be all cleared up by the end of the week (I may or may not be that annoying mom calling certain departments looking for some clarity as to a plan….)

----------------------- CALIFORNIA UPDATE -----------------------

[click HERE if you require a bit of a background information about our California referral]

So we finally got our first bit of news from California last week as our cardiologist received Dr. Hanley’s initial opinion on Evanna’s case. He sent a letter,  and in it he stated that Evanna’s case is definitely on the extremely difficult side (even for him), and isn’t sure if there is anything he will be able to do. HOWEVER, before making any final decisions, he requires a new cardiac cath to see if there is anything he can rehabilitate (even within lung tissue). So what does that mean for us? WELL, essentially we are in for a very busy few months, and our upcoming OHS is creating even more logistical problems then we had ever anticipated. Basically we are still going to proceed with going up to Edmonton next week and replacing Evanna’s valve as originally planned (as Dr. Hanley agreed that we need to deal with this endocarditis before he will even touch her). We then will probably transfer back down to Calgary once she’s stable enough, and complete the regular “six week recovery” timeline (which puts us around mid-January). Then we will go BACK up to Edmonton (which I’m assuming another ICU transfer will have to be arranged) and do a cardiac cath and send those results down to Dr. Hanley for him to review. Oh, and did I mention that we’re also trying to book a bronchoscopy here at ACH (Alberta Children’s Hospital) around the same time to see if Evanna’s increased strength has finally reflected in her airway and make some vent weans? Oi.

Overall, while I wish we were given a clearer answer, we (our cardiologist included) were not surprised with what written in Dr. Hanley’s letter, and somewhat already knew what was going to be said (ie. requesting a new cath…we just didn’t want to put Evanna under this very invasive procedure without a really good reason).

So that’s where things currently stand and all I have in regards to updates.

Disclaimer: I know a LOT of heart/medical moms follow my blog and Evanna’s journey, and have been sent several messages (with only the best intentions) over the past year with suggestions about other places we could/should seek opinions from. I’m well aware of the fantastic cardiac programs at BCH, CHOP and Texas (do you know how many facebook heart mom support groups I’m apart of?? lol), and the incredibly high rankings they boast in the USA as “centers of excellence” for pediatric cardiovascular surgeries/programs and the absolutely amazing things they do. However, we are not going for the hospital but the SURGEON. Our healthcare system sends children from Canada to many different facilities all over the USA depending on the nature of condition, including the centers I just listed and more. Evanna has a very unique and rare congenital heart defect, and the surgeon that specializes in Evanna’s particular CHD is Dr. Hanley. He pioneered the “unifocialization” (the initial surgery Evanna had back in 2014), and performs surgeries on children almost identical to Evanna on practically a WEEKLY basis (one MAPCA mom overheard the CVICU nurses call it “unifoc Wednesdays”), and one of our cardiologists here stated “imagine half an ICU of just MAPCA kids – because that’s what it’s like”. He is the best of the best at what he does (even considered a “last resort” for many CHD cases), and it’s why our medical team here (our own world renowned/first class cardiac surgeon included) has approved this referral, because they know that if Evanna has a chance whatsoever – Dr. Hanley will provide it. Unlike any other pediatric cardiovascular surgeon, he is known for actually going into lung tissue to rehabilitate collaterals (which is what we’re somewhat hoping he can do for Evanna), and he gets sent cases from both around the USA and world (ie. China for example) to perform surgery on. I’ve stated it in past blog posts, but I’ll say it again: according to pediatric cardiovascular literature (and bluntly said to me by our surgeons team) – MAPCA’s is considered the MOST difficult CHD to manage surgically (don’t believe me? Read this article HERE where it’s stated right in the first paragraph). Please, please trust that Nick and I will always continue to advocate for Evanna as we always have, and will leave no stone unturned for our daughter, however, our options are limited and that’s just the reality. St. Louis -- the children’s hospital that is considered the “center of excellence” in the WORLD for pediatric heart/lung transplants has also recently released an article that “collateral dependent” children (ie. MAPCA kids who do not have native pulmonary arteries, and rely solely on collaterals for pulmonary blood flow like Evanna) will no longer be considered for heart/lung transplants due to devastating results (to avoid getting too graphic, basically they have not had one patient live longer than 6 weeks postop due to horrific complications). SO, as you can see, both myself and our medical team have exhausted every option and avenue, and while modern medicine has come a long way, it unfortunately still has its limitations today (which is why CHD research remains so important). Dr. Hanley is the “MAPCA guy” in the CHD surgeon world (which isn’t that big btw), and if anyone can help improve Evanna’s prognosis and quality of life – it will be him. It’s been stated by both cardiologists and parents that he likes a challenge, but I am also personally aware of cases that he has had to turn down too (essentially he NEEDS something to work with just like any other surgeon at other hospitals would too), and at the end of the day we have to consider what’s best for Evanna and how much more we put her through too.  

As always, thank you for your continued love, understanding, concern and support.

xo The Irvine Family

|| first HOMEVERSARY ||

In all honesty, this particular anniversary came up a little fast, and slightly out of nowhere for me (though we've been a little busy lately, with a LOT going on right now). This date has been written in my agenda for a few months now, but I still almost overlooked this particular anniversary and even almost forgot about it until just last night.

[NOVEMBER 9, 2015]

One of the greatest days for our family – after 400 days of so many ups and downs, and setback after setback -- we finally got to bring our baby girl home! Sometimes when I look back at those first few months home, I can’t believe we actually survived those very critical and somewhat unstable days (I get neasous just thinking about our first few trips out of the house). Even though Evanna was stable enough to come home, she was still quite sick and fragile. I often talked about how at one point she was too well to be in hospital (and it even was starting to become detrimental and somewhat dangerous), but she almost was not quite healthy enough to be home….however -- we did it nonetheless! Today Evanna is absolutely thriving at home, and has grown and developed SO MUCH over the past year. In fact, during our admission last month, I ended up having a great conversation with one of the Respirologists about how well Evanna has done since going home last November. This particular Respirologist admitted that she was one of the doctors who didn't think Evanna should be discharge last November and would  just end up readmitted in a matter of days (in all fairness, Evanna is one of their most complicated cases they've seen come through their hospital doors and had built herself a little "reputation" to say the least...so we had a number of doctors somewhat try and delay us from taking her home that day). The Respirologist then told me that she is quite happy to see how wrong she was, and was just absolutely thrilled at how well Evanna has done under our care at home (and yes, I will take that has a little "head pat" for all its worth).

--------- comparison between November 2015 + November 2016 ---------

|| housebound ||

This blog post was originally posted on Milk + Confetti. Check out the site for more mom related stories and advice.

photos by Guenard Photography

It’s my husbands second night shift of his regular 4-day work tour, which means I’m alone in bed trying to fall asleep. I can clearly hear my daughter’s home ventilator from down the hallway, and I just lie awake staring at the bedroom ceiling listening to the sound of her breathing. Tears are streaming down my face – but I stay exactly where I am as I don’t want to embarrass myself in front of the homecare nurse, nor wake my daughter up just so I can cuddle her to make myself feel better. Not since the eve of her tracheostomy surgery has body filled with this intense anger, and ask the myself the ever popular question -- “why us?”

Just a few hours earlier I had put daughter Evanna to bed, but while disconnecting her from the living room ventilator to carry her up the stairs to her bedroom vent (like we do every night) – something was triggered, and I felt this overwhelming sense of being a prisoner in my own home.

It had been an abnormal week where I only worked one day out of the house nor had any medical appointments booked, so “cabin fever” was raging its ugly head. Though I thoroughly enjoy the odd lazy day at home with nothing to do but binge on Netflix and play with my daughter – the social butterfly in me likes to get out often and enjoy life whenever I can. I’ve been able to keep myself heavily distracted the last few months with lots of personal plans, but “family fun” pictures posted by Facebook and Instagram friends have been flooding my newsfeeds, and they’ve been little sharp reminders of our current, but severe limitations.

When I use to picture what our family life would be like when my husband and I talked about having kids, I envisioned trips to the local pool, summer fun at splash pads, fun little weekend getaways in the mountains, and the casual outing to ice cream shops while exploring downtown – things considered everyday normal occurrences for the average family.  I couldn’t wait to receive our invitation to local mom + baby playdates and build some bonds with other mamas as we compare notes and share tips with one another. I never imagined that something so simple would be significantly impacted by the shear fact that it takes no less than TWO people to pack our daughter up, walk out of the house and load her into our vehicle.

EVERY . SINGLE . MOMENT. that our daughter spends outside our home is measured in battery life of our home ventilator + suction machine – if we have access to electrical outlet, and how many oxygen tanks we need to pack. On average, we currently go through a LARGE portable oxygen tank within 3-4 hours, and for safety purposes we always pack an extra 2 tanks in our trunk for emergency purposes only (ie. car accidently breaking down, get stuck in traffic, etc). So a simple afternoon out of the house means we are packing a total 4-5 large oxygen tanks, along with the rest of our medical equipment into our little SUV in order to keep our child alive and healthy. This doesn’t include our emergency trach kit, an emergency bagger in the very unlikely chance we experience mechanical failure of the vent, feeding pump and formula (which she receives every 4 hours), soothers, regular toddler toys and the almighty tablet (which we somewhat consider medically necessary, as it’s a tool we can use to calm our daughter down and bring her out of an oxygen desaturation).

I distinctly remember learning about the term “quality of life” in high school, but never did I expect to actually experience a reality where obtaining it was something we would have to work really hard at to achieve. While our quality of life has indeed improved since our year long hospital admission, our life is still greatly controlled by life saving machines and the restrictions they place on even the most mundane tasks. There are moments that terms like “house bound” and “house arrest” feel so very real, and I have absolutely felt trapped by our very situation. I often mourn the idea that we could never go on a family vacation due to oxygen alone, and an entire day trip would mean packing a minimum 10 large oxygen tanks.

I’ve experienced countless moments where I wonder if and when this situation will one day actually impact my medically complex child, and worry about it on a consistent basis. The months continue to pass us by, and things have continued to remain unchanged – so my anxiety about it and her quality of life continues to build. Right now she is still so blissfully unaware of everything and is the happiest little girl I know…. I just pray that we can either get to a point that we can either sprint off the home ventilator or wean off oxygen before she realizes these intense limitations she has just in order to LIVE and breathe on a daily basis.

Something will eventually give. I guess I’m just afraid of what that “something” will be. The possibilities range from finally able to make decreases and sprinting off the ventilator, weaning oxygen, to even her walking (meaning I can easily carry her vent and oxygen by myself and no longer require having to count on someone just so we can venture outside our home) – to the complete opposite of Evanna getting increasingly sick and we lose her. It overwhelmingly angers me that with the reality of her terminal prognoses, we currently can’t “live life to the fullest”, and emotions like guilt + sadness live like a large lump in my throat more often than I would like. I grow both impatient but increasingly afraid of the future. I want to press both the “fast forward” and “pause” button at the same time, and just wish someone could prepare me for what’s to come – a crystal ball would be really nice right about now.

I know – motherhood isn’t easy, but this particular “season” has been very hard to say the least, and I earnestly hope that we will be blessed moving forward and strengthened by everything we’ve had to endure. Our limitations and hardships are beyond exhausting (both emotionally + mentally), and I both crave and yearn for the normalcy that everyone around me gets to live. For the most part, we carry on day-to-day without giving it too much thought, but the days I do ponder about it, it comes at me like a bag of bricks and breaks me down a little. All I can do is try and pick up the pieces, glue myself back together and be the best mother I can be to the most deserving girl in the world – my daughter. I won’t give up and we will continue to press forward to the best of our ability as we’ve always done before.

xo The Irvine Family

|| halloween + cardiac clinic ||

Man oh man, I don’t know if I like this whole “waiting around for a surgery date” business – especially when it involves a trip to up to the Stollery Children’s’ Hospital for open heart surgery. Excluding Evanna’s very FIRST open heart surgery (okay okay …and the GTube surgery), we haven’t had to wait for “that phone call” in a very long time. Normally (for us), it generally goes along the lines of “Evanna needs surgery”, is immediately flown up to Edmonton, and has surgery the next day. Instead of just a few moments notice, a couple of hours to pack, and hastily making several phone calls to family, homecare nurses, work, and the Ronald McDonald, we now have a handful of weeks to do all of that…. and I’m not sure if I like it. We had a check-in with our Cardiologist (more on that a bit later), and she chuckled at my remarks and stated “this is how it’s suppose to be!”.

So Monday was Halloween. At one point I was 100% sure that we’d still be in hospital, but the stars aligned and we managed to get discharged just a few days before – meaning for the first time, we got to celebrate our FIRST Halloween HOME! I originally didn’t have plans to actually take Evanna out, but my mom called me on Sunday night and said they were coming over with my sister, niece + nephew…. which meant I had to figure out some logistics on how I was going to make the whole thing work (ie. both Evanna’s original and newly acquired medical equipment). Well I just happened to purchase a wagon for Evanna (it's suppose to be a Christmas present -- oh well), so I decided there was no harm in breaking it out a little early for a good cause.

It’s quite common for it to snow by Halloween here in Calgary (think snowsuits under Halloween costumes), but thankfully we had decent weather – warm enough that just a few layers were required. I was sure the wagon I purchased was on the larger end, but apparently Evanna’s “stuff” proved otherwise. I was able to get her emergency trach kit, suction machine, IV pump bag, and her ventilator in the wagon with Evanna, but I still had to pull out the oxygen tank carrier. We made it to about 7-8 houses before Evanna was DONE, but we still did it nonetheless, and we achieved this little milestone!

On Tuesday we had a quick appointment with our Cardiologist. The ECHO + ECG was done first (with a few compliments on Evanna’s excellent behavior), before proceeding to meet with Dr. Fruitman. Overall we’re just keeping a close eye on her prosthetic devices for any vegetation growth (which would prompt an immediate surgery), and our Cardiologist was just ecstatic with how great Evanna was looking. She has since reported Evanna’s status to our surgeon, and now we're just waiting for that phone call with a surgery date (again, aiming for the end of November). Plans are in the works with Edmonton and Calgary’s ICU’s in regards to transport, and we’re just trying to enjoy these last few weeks at home as best we can.

xo The Irvine Family