Thursday, March 23, 2017

Evanna's Special Heart

In the past I've tried my best to explain Evanna's "special heart", and why it's so incredibly rare, severe, and complex. This video created by Stanford (the hospital we're currently trying to take Evanna too) does an absolutely fantastic job at showing Evanna's heart defect (in its entirety!), and so I just had to share this video.

After watching, I want to explain that it's Evanna's "collateral arteries" (which they refer too in the video) continue to be our biggest issue to date. There is no DNA for them to grow and are very unpredictable (which is why no two MAPCA children are alike, and cardiologists are unable to provide any type of life expectancy for these kids). They are very prone to stenosis and occlude (ie. close off) -- which would prove fatal. Our hope and goal with going to California, is that Dr. Hanley can work his magic and try to see if he can rehabilitate any of her collaterals to potentially improve her prognosis and overall quality of life.  

Saturday, March 11, 2017

|| happy 2nd tracheoversary ||

Well, we did it! We survived another year at this thing called the “trach life”, and yes – it’s kind of getting easier and easier as time goes on. As previously mentioned (and what also sparked this very emotional post), while I still have my moments and I can’t wait to get off the vent (is that too much to ask for??) – I feel like we’ve really embraced this situation for the most part, and found a nice little rhythm and state of true happiness.

In full disclosure, I honestly thought we would have already been decannulated (or very close too) based on the original timeline our Edmonton ENT estimated (the one who actually did the procedure), and would have never dreamed that we would be in almost the exact same place that we were in last year. However, it was just an estimate based on the information he had at the time. Every baby is just so different, and there are so many variables to take into consideration. Yes, there are many that decannulate in a very timely manner and quicker than anticipated, but Nick and I have come to terms that isn’t in the cards for our family and have adjusted accordingly.  

Instead we generally focus on other accomplishments and milestones Evanna has achieved – and none of them would have been possible without her trach + vent… so we so incredibly grateful for this option and how it’s truly blessed her life. Lately, we’ve been getting a lot of compliments at how “healthy” Evanna’s been looking, and our medical team is extremely pleased with how well she’s been doing over the past year. Evanna’s very quick recovery from her 4th openheart surgery (not to mention how stable she remained while awaiting surgery) was a huge indicator to her health care providers on how far she’s come over the last 12 months, and they are so much more optimistic going into April’s bronch.

To celebrate this “tracheoversary”, I decided to film our bedtime routine to give everyone an idea of what that entails (thanks to our nurse Carmen for filming a few parts), and the difference having a trach brings to it. Nick and I often do it together when we’re both home (though Nick tends to take the lead as he’s a tad more efficient than I am), but given Nick’s work schedule and the times I’m away, there are many times we do it on our own. The biggest thing to note is we only do “trach tie changes” when we’re both present, but because that part doesn’t need to be done everyday, it’s not a huge deal, and just ensure we are doing a quick stoma clean before bed.


To end, I just want to say that we’re incredibly thankful for everyone who’s involved in our life because of the trach, and it’s been quite the experience to say the least. From all the staff we’ve been lucky to meet within the PICU’s in both Edmonton and Calgary (intensivists, surgeons, specialists, RT’s, nurses, lovely fellows, residents, social workers, child life specialists, dieticians and pharmacists), ALL of Unit 2, the whole respiratory team (Respirologists, clinic RT’s & nurses), a very accommodating cardiology team (and the very patient ECHO techs…as the trach/vent makes those exams slightly harder to work around), our own private homecare nurses (who seriously deserve there own entire post) who watch, love, and care for Evanna on a daily basis. In more recent months, we've added some wonderful therapists to our care team, and know that by the years end, that circle will only get bigger. Finally, all of our wonderful followers, friends and family who have stuck by us and continued to show so much support for us.

xo The Irvine Family

Monday, March 6, 2017

|| lake louise + a swallow study ||


All has been well and somewhat “normal” (our normal anyways) in the Irvine household, and other than some minor colds being passed around (can it be Spring already??), it’s been a-okay kind of month. We find ourselves in a “hurray up and wait”/”holding pattern” phase yet again as we wait for our upcoming Bronch (April 5th) and Cath (date still TBD), but trying to enjoy every bit of calmness we're experiencing.

We did find ourselves finally admitted to the ICU for monitoring and vent tweak as per our respiratory team the first weekend of February, but in hindsight, I feel like it was sort of a pointless situation. We did learn a few useful things that we’ll be able to use in decision-making after Evanna’s April bronch, but the exhaustion of those 3 days in ICU wasn’t really worth it in my opinion….oh well.

[INSTAGRAM ENTRIES]
February 5, 2017


so.....we are being discharged already. We only made one small change (we decreased her delta from 15 to 12 for those who want to know and understand), but we learned + gained a lot of information that we will be able to use when we actually proceed with a bronchoscopy in March/April. Essentially we learned that Evanna is using her "upper airway" quite frequently to breathe when she's asleep (she has a large "leak" and her trach is considered "very positional") instead of the pressure she's given through her trach. It's not necessarily a bad thing when all her "numbers" (ie. oxygen saturations, CO2, breathing rate + heart rate) stay within normal limits, and again points to the fact that Evanna is getting stronger and potentially ready for some ventilator decreases. HOWEVER, while the numbers are showing us all of this – the more appropriate (and safer) way to make weans is to visualize what her trachea is actually doing when they make those decreases in a controlled environment -- via a bronchoscopy. So armed with all that new information, we are being discharged today with one little decrease and a lot of new information that we will incorporate into decision making when we come back for our bronchoscopy next month.
Yes, this process seems extremely slow, but we're dealing with an A I R W A Y, and the wrong decision could result in fatal consequences (something I have to remind myself when I get impatient). Yes, Evanna's history and her "reputation" doesn't help sometimes (lol), but they just want to make sure Evanna is more than ready before any decisions and changes are made. The medical team has implied that they do think she's ready and can't believe how much bigger and stronger she is, and we just have to wait a "few more weeks" to make these changes.
I will say, it was definitely weird to be in ICU when Evanna is the best she's ever been (and no IV!! ....that was a first) and were more than happy to go home....cause man, we were getting real board!

February 19, 2017

it's funny how a "good admission" can still be emotionally charged || stay with me here, but despite being admitted for a good reason earlier this month, it was still wrought with anxiety and some very emotional moments (which resulted in some major tear works all the way home after the 2nd day). First and foremost, I want to first explain while I don't care how long Evanna has the TRACH for, I am very desperate to get her sprinting OFF of the ventilator -- at least during the day. I can't emphasize enough how much it'll improve our families quality of life if we only have to deal with a trach and a little bit (okay, okay a lot) of oxygen. Not only will we gain freedom to move freely within our own HOME, but taking Evanna out will improve immensely. When we initially agreed to the trach, the ENT surgeon estimated that Evanna would only need it for a year – maybe two (.... and this is why they hate giving estimates lol). We are just weeks away from Evanna's 2ND "tracheoversary" and no where close to decannulation (the process of removing the trach). Last Spring we thought that we could begin weaning Evanna off the vent, but were met with huge disappointment when we were discharged without a single decrease made. However, lots has happened over the past year and we hope that by giving her some more time, we will have different results this time.
My relationship with the trach + vent is very much a love/hate one. I am beyond grateful for this option and the opportunity it's giving Evanna to grow, develop and get stronger... and most importantly – allow her to be HOME with us. There are also many "trach perks" and I'm so incredibly thankful to live in a place that provides so much support.... however, the "tach life" still imposes many limitations, and despite our best efforts, there are still many things beyond our reach that people take for granted on a daily basis.
Our bronch has been officially set for April 5th, and hopefully there will be an ICU bed for us, so it can proceed as planned. I'm incredibly nervous, as this bronch could allow us to work towards the "freedom" I so desperately want, or continue to make us be patient and wait a little longer.

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[ON TO OTHER NEWS] With only one days notice (because they had a cancellation), we FINALLY had a barium swallow study done on Valentine’s Day, and Evanna PASSED! We are currently cleared for pureed foods, and are so happy (especially our occupational therapist lol) that we have some freedom to start being a bit more aggressive with oral feeding. We know we have a huge mountain to climb in this regard, as Evanna has absolutely no interest in eating, but this is a great first step forward. Wish us luck!!

Last weekend Nick and I went away for just over 24 hours to Lake Louise, but it was actually a pretty big deal. In the past we’ve stayed at a hotel for a night here and a night there after Evanna was born -- but they’ve all been while Evanna was in hospital. I know that sounds completely insane (especially if  you’re new here), and some may gasp “what!?! You went off gallivanting while your child was in hospital!?!”, but hospital life is kind of just another regular day to us, and it was generally for something big (bridal party/wedding event, celebrating an anniversary, etc)…. and you couldn’t ask for a safer place to watch your child when you’ve got cardiac intensivists at your fingertips. Evanna was always super stable on the 3 times we went “away” (but weren’t really… lol), but it was highly encouraged by the intensivists themselves, and they were always ecstatic that we were taking some time out for ourselves. What I’m trying to say is we had some of the best gosh darn babysitters that money could ever buy….so once in awhile we took advantage of it when all was well, and we needed a break.
Fast forward to now. We’ve tried going away in the past (think April 2016 for our anniversary……but ended up admitted for a sternotomy infection forcing me to cancel plans to Canmore), but up til now, any nights away have been separate so one of us was always home (or at least extremely close by). I told Nick now that Evanna is a little bit older and way more stable, it’s time we do a few more things TOGETHER as a couple this year, especially when we have the resources to do so (in the form of homecare nurses). Now, Nick is what I like to call a “helicopter parent”, and while that’s not a bad thing whatsoever (especially when you consider our situation and the attention she requires), but it’s super easy to make excuses to not leave Evanna in the care of others (she’s got a lot of quirks to say the least…) and likes to keep her in this protective bubble. So, I’m trying to ease him into it, and thought this very small and quick 24 hour trip would be a great first step (cause I’m hoping to do a full weekend once or twice this summer). Anyways, I’m happy to say the trip went great and all is well. We first headed to Lake Louise to try a little ice-skating…but we didn’t stay out on the ice for very long because man, that s#!~ is hard ya’ll! While it did get easier the longer we were out there on the ice… Nick and I definitely need a bit more practice. After returning our skates (we just rented them for a few hours from the Fairmont), we ended up just walking around and headed out further out on the ice to take some pictures. We then headed back towards Banff to meet up with some friends for dinner and even ended up meeting up with Nick’s sister and her boyfriend who also happened to be in Banff that same weekend. Overall, it was a really nice mini vacay and Evanna got to hang out with her favourite nurses. 



[CALIFORNIA PROGRESS]

Probably the #1 question I get asked all the time is what’s the latest on our referral to California (if you're new here, you can read HERE, HERE, and HERE to get a better background on this and why we're currently pursuing another open heart surgery "stateside"). I get it -- this is a huge deal and there is definitely a lot riding on it. Trust me, I am just as frustrated at how slow this whole process is, BUT thankfully Evanna is very stable and we’ve got time on our side (a huge blessing that we're incredibly grateful for).
I decided to call the cardiology clinic last Tuesday, as I still hadn’t heard from Edmonton about a Cath date, and our cardiac nurse informed me that we were in a bit of a “communication limbo”. Our surgeon in Edmonton wanted to clarify where the Cath should take place, as Dr. Hanley is know for being very particular (like to the extreme), and generally prefers his team at Stanford to perform the Cath. However, being that we’re coming from Canada complicates that, and it’s a little easier said then done. I asked a fellow MAPCA mom who lives fairly “local” to us (Edmonton) who went down to California for their heart surgery a few years ago, and she told me they had their Cath done up in Edmonton and Dr. Hanley  just gave specific instructions on what was needed. The following day our cardiac nurse called us back to inform me that Evanna’s name has now been added to the Stollery (Edmonton) Cath list, so hopefully we’ll get a phone call with a date in the next couple of weeks.

Once the Cath is completed, it will be sent to Dr. Hanley for his final review on whether he thinks there is anything he can do to help Evanna and go from there. That’s basically all I got for an update….

xo The Irvine Family


Monday, February 13, 2017

"what it's like being a 'zipper-club' Auntie"

A few weeks ago, I stated that due to recent events I wasn’t able to plan much for Congenital Heart Defect (CHD) Awareness this year. Well the morning after that particular blogpost went live, my sister Danika sent a text to ask if she could run a few idea by me, as she wanted to raise a little awareness herself and told me to call her as soon as possible. When I finally got a chance to call her back, she asked if she could write a post about how CHD has personally affected her, and give some perspective as a family member. I immediately loved the idea and told her to get it to me as fast as possible, as I thought that would be something awesome to post and share here.

The next day she called and read out what she had written, and I completely teared up over what she read to me. This “heart journey” is both beautiful, but also completely heartbreaking – and not just for us as parents, but for our whole family too. While not many people can comprehend what we go through as parents and the many hard things we have endured, our family has definitely felt the affects of this diagnosis and the lasting impacts it has made. -- Kierra

I have thought many times on where to begin, but for me it started over 3 years ago when I got the call that has changed and shaped the course of our lives over the last few years.
It was a regular (but very cold) November morning, and had gone to the city to get some shopping done before my sister's gender reveal party – and anyone who knows my sister, knows that she loves to plan a good party & event. Kierra loves the aspect of the fun and getting togetherness, but she also loves to plan and organize because she was – and still is, a very put together and organized person. 
Kierra had a Facebook event up for that evening’s gender reveal party, and I gotten a notification that the party was canceled. I instantly knew something was wrong and tried calling her, but she didn't answer right away, so I just waited for her to call me back instead. A little while later my phone rang. I quickly answered and immediately asked her why the party was canceled (I'm now tearing up as I write this). She proceeded to tell me that she had gone for her 18 week ultrasound and at first things seemed normal not realizing that having a doctor talk to you privately afterwards was not. She then told me about the heart defect. I felt the air leave my lungs. We sat on that phone together – not much more was said, and we just cried. How could this happen? Why? Was it even real? It's not fair. My heart just ached for my sister, and wanted to take everything off her shoulders and place them on mine. We ended the phone call, but I continued to cry all the way home. The next few months were emotional…. there were some high highs and some really low lows. I planned her baby shower and invited friends around us to celebrate. It was a bit different as we asked people not to gift Kierra with smaller sized baby clothes – as we were unsure if Evanna was going to have surgery right away – but it was a happy occasion nonetheless. Then Kierra had to leave and temporarily relocate to Edmonton to deliver Evanna, which so hard being far away, not knowing what the future was going to hold. 

Well the day of Evanna’s birth had arrived, and it wasn't anything like we had expected. She born via emergency cesarean, and I was kept waiting by the phone waiting for updates, but due to so much chaos... was somewhat left in the dark for most of the day. I kept praying that everything was ok. I remember finally getting that phone call – but was left in tears upon hearing the news. I was filled in and told that Evanna was unfortunately the “worst scenario” of the two diagnoses they were contemplating while Kierra was pregnant. So many thoughts raced through my mind as I thought of all the things my sister was never going to have with her daughter. I thought of how she was going to lose Evanna before she even had a chance to really know her. My heart ached, as I wished to trade places for just a few moments. It wasn't fair! I wanted to scream why? How? I then began to fall into a dangerous thinking pattern. I started to feel guilty that I had a healthy and happy child. I then had my second child and experienced some major post-partum anxiety. I wasn't sleeping nor functioning well. I eventually sought out counselling to deal with the guilt I felt. I kept telling myself and had many people tell me I shouldn't feel this way. But I did I couldn't help it! That was my sister! That was my niece! I wanted to fix something that I had no control of. It took a whole year to come to peace with our current family’s circumstances. Hospital visits (our version of “playdates”) became our new normal whenever Evanna was transferred closer to home, and alongside my sister, counted as each day, week and month passed us by…for a jaw-dropping 400 days in hospital.
August 2015
I got to experience some beautiful and very heartwarming moments throughout this journey too – my daughter Alexa always looked forward and loved our visits to the hospital with her cousin, and it was the cutest thing when she would give Evanna her a soother or read a book to her in the ICU crib. She wasn't afraid to climb right in and cuddle in close with Evanna. She didn't see cords and IV's – she just saw her little cousin who she looked forward to seeing every week. I will forever treasure those memories. 
I still don't know what the future will hold or how long we will have Evanna with us but over the last few years I've learned a few things: 

1. You don't realize the strength you have until you have to deal with something difficult.
2. Nothing positive comes from being Negative (this one I learned from my sister -- her main mantra for the hardest days)
3. It’s ok to cry.
4. Family is so important.
5. My medical knowledge of things has definitely expanded – though I can't even begin to even touch the amount my sister and my brother-in-law knows.
6. I didn't realize that our family dynamic wasn't normal. A lot of people don't have the support my sister does from us and I will never let anything be so hard that I will turn my back..
7. I have learned to be thankful for the small things.
8. I learned how common Congenital Heart Defects are, and have now gotten involved in a lot more charity work and awareness campaigns. 

- Danika Asuchak

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Thursday, February 2, 2017

january happenings -- postop mayhem and last minute hospital admission



If January is going to be any indicator of how the rest of the year will go… then I might just retreat to my bedroom and hide under the covers til’ Christmas. It’s been one appointment after the next, working, continued construction of our basement, and just life in general. The last few months have definitely made me see why lots of moms of medically complex children give up their careers to stay home (or move to something that’s more home based), as I swear each day I’m adding another appointment that we have little say in. Clinics call and basically name the date and time, and unless it conflicts with another medical appointment – I just have to take it with a smile…cause these are specialists we’re talking about… and you take what you can get! It’s made me appreciate the careers Nick and I choose, and the ability we have to work around each other’s schedules so one of us is generally available to take Evanna to these appointments (along with the additional resources + funding we are given to ensure we have a 2nd person with us to help facilitate the transfer). It’s downright exhausting some days. I know it has more to do with the fact that most of this is currently “postop” related… so while February, March and April are expected to be just busy, I really hope just like last year, that things will somewhat calm down for the summer (pretty please?).

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We started the year/month off by hosting a causal brunch at our house on New Year’s Day with some of our closest friends (which already feels like a life time ago). It was something I had wanted to do for a while, but was unsure if it would happen given the whole Endocarditis situation and hospital admission. Thankfully Evanna flew through recovery, and we got home just before Christmas, meaning I was able to salvage our New Year’s brunch plans after all.

[RESPIRATORY]
The following week we had our Complex Airway Clinic appointment -- our first one for 2017 (at the moment we still see them on a monthly basis). While the Respirology team stayed up-to-date through emails over the past few months and were kept informed on her respiratory status while we were admitted, they were happy to see her back in clinic -- and looking so great I might add. The physician we saw happened to be the one who did Evanna’s bronchoscopy last May, and while he tends to be a “man of few words”, was thrilled to see Evanna. He noted how pleased he was to find out that despite dealing with something like Endocarditis, that she remained very stable – and even got to go home for a little bit in-between while we waited for her surgery (until we lost her PICC line that is….). Then to be discharged after just 11 days from surgery was just remarkable and just another indicator of how strong she truly is getting. While in clinic, they monitored her CO2 levels, and it stayed within a range of 28-33 (she use to sit in the 50s). Nick later told me that they average person sits between 35-45 and so this is one of the very first signs of being “over-ventilated”, and it’s time to proceed with another bronchoscopy to finally see if Evanna is ready to handle vent decreases (which the Respirologist agreed with). So once they consult with our ENT to see when he’s in the OR (they don’t necessarily need him for the procedure, but would like him in the “area” to pop in and quickly see Evanna’s trachea while they’re scoping her), and will book a date as soon as possible. From my understanding, we are currently aiming for March 1st, with a backup plan/date of April 5th – cause as you all know, it somewhat takes a “bump or two” before we actually see a procedure happen around here. Oi vey.

On January 19th, we saw a special developmental pediatrician that we were referred to by the genetics clinic back in September at the Child Developmental Centre. I was initially told to expect a 3-4 hour appointment…but thankfully we were only there for about an hour. We didn’t learn too much that we already didn’t know, and essentially confirmed that we are already accessing the appropriate supports we currently need for Evanna. The pediatrician explained that she see’s many families with developmental issues, but most of them don’t have quite the extensive medical background that Evanna does – so sometimes the appointment can be quite lengthy as it goes into how to access certain programs – however, because of “all the medical stuff”, we don’t really have to fight as hard for certain resources and it all kind of “just falls into our laps” (as parents we still have to inquire and request for referrals to be sent…but for the most part we are immediately approved given our medical situation…another trach silver lining perhaps?). There were a few things that I did take away from this appointment that were very important to recognize as we move forward with Evanna’s care and development. The first thing the pediatrician said is we’ll probably never know if Evanna’s delays are actually “22q” (her chromosomal syndrome) related -- something the pediatrician said she specializes in; and for the most part, we will consider all of her delays medical related (very prolonged intubation period, very chronically sick until about Spring 2016 and the extensive sedation medication Evanna was on over a 12 month period). Next (which is somewhat common sense…), is that children cannot develop when they’re sick. So though we’ve been home since November 2015, Evanna was still technically pretty sick those first few months (there are times I wonder how we ever survived that initial period we were home lol) and it’s why we really didn’t see much development until about April/May. However, if Evanna continues to remain “healthy” (or as I always say “Evanna healthy”), we should continue to see lots of momentum in her development. Thirdly is that the pediatrician noted that Nick and I seem to be very realistic when it comes to our expectations. I guess she often see’s parents who come to her very frustrated and with somewhat unrealistic goals – and so she was happy to hear that we understand our complicated situation, know things will take time and though we will continue to push Evanna, it will have to be at an acceptable pace. To quickly note – based off her assessment, minus communication, the pediatrician placed Evanna at about 12 months of age developmentally…which closely matches to our time home (minus those first few months) and what I was hoping to hear. On Facebook I see a lot of parents absolutely devastated with these types of assessments from developmental appointments, but I feel like Nick and I are pretty realistic and so we weren’t thrown for a loop or caught off guard with anything that was said to us.
Lastly (and most importantly), was speech + language. While we think Evanna is making great gains in regards to physical therapy (she got fitted for a walker a few weeks ago!…but more on that later), the pediatrician feels the one place we might experience a lot of trouble will be her communication…and that’s due to three reasons: first is “22q kids” tend to take a little longer to develop this skill and it’s very well-known they tend to not talk until they’re a little older. She then went onto explain that there’s a certain “window” that these skills begin to occur, and due to circumstances outside of our control, we basically missed that window (…and here’s where I begin to wonder if maybe Nick and I should have proceeded with the trach a lot sooner than we did….oh well – hindsight is always 20/20). Finally (and the most obvious), is the mechanical obstruction that the trach presents. Due to all of this, she definitely would like to see other tools incorporated that will allow Evanna to communicate with us -- and the hope is that once a few of these obstacles are removed, it’ll allow for an easier transition. Sorry, I got more detailed then I had originally intended too, but it’s nice to take the time to properly explain things. Yes, we definitely have our work cut out for us and #Evannasroadtorecovery will be years in the making, but it will all be worth it.

Last week was busy seeing our speech-language therapist where she showed us a few of the tools that the developmental pediatrician talked about and then getting Evanna fitted for a walker! Just like the standing frame and exersaucer, she absolutely hated it (girl hates change), but we know she’ll learn to love it in no time too. We’ve recently come to a place where the standing frame and exersaucer are no longer challenging for Evanna (she almost gets too excited when we pull them out to put her in), and so this has become the next natural step. We are now waiting on AADL funding to go through (though there is still a large portion that Nick and I still have to cough up…) – which takes about 4 weeks, to which it will then be delivered to our house to begin implementing into Evanna’s daily routine. We will still continue to use her standing frame and exersaucer as they provide great weight-bearing opportunities, but my hope is that over the next yr we will slowly transition from the standing frame to the walker exclusively. Baby steps!


[CARDIOLOGY]
On Thursday [January 26] we saw our cardiologist for our official postop checkup and talk about Cath plans. The ECHO went very well and the tech was able to get a ton of amazing images! This particular ECHO tech is one we are extremely familiar with as he’s done probably about 80% of Evanna’s Calgary ECHO’s -- and we just love it because we’ve been able to build a nice relationship with him over the years. In fact, back in April when we were dealing with that major sternotomy infection – there was a lot of confusion surrounding a “sedated ECHO” to take place while Evanna was getting a CT done, but it was causing a lot of logistical issues and headaches at the time. Thankfully this ECHO tech knows Evanna very well and called up to the unit to explain that Evanna does NOT need to be sedated for an ECHO because she lies very still and normally is pretty easy to perform ECHOs on. He then came up to the unit with his equipment and immediately did the ECHO to prove his point – it was awesome! ANYWAYS, this ECHO went extremely well, and the tech got a LOT of amazing images of Evanna’s heart, and Megan (Nick’s sister who was helping me for the day) and I were laughing at the tech’s enthusiasm when he was hitting the “perfect spots” and getting some wonderful images of her new valve, her collaterals (which is rare to see from Ultrasound), and left ventricle. It was a fun exam to say the least.
[CALIFORNIA UPDATE]
After the ECHO, we met with our Cardiologist to discuss how Evanna has been doing, and overall was happy to hear that things have been going better than ever. We decreased her Lasix (it’s a diuretic med) to just once a day and will probably take her completely off of it the next time we’re seen in clinic. We discussed what’s been going on from an infectious disease standpoint, as well as respiratory – and she was ecstatic to hear about the potential progress we’ll be making over the next several months. We then discussed plans for the Cath that we still need to do that was requested by Dr. Hanley (the Californian surgeon). We don’t need to “present” Evanna to cardiac conference in Edmonton again -- as that was already done back in the fall, but now that Evanna has been off antibiotics for several weeks, we just need to do ONE more blood draw to check that things remain “all clear” and our cardiologist will send the referral for the Cath…. which means we’re now aiming for a March date. I was slightly disappointed with this timeline, and overall hate just how much impact Oct/Nov/Dec’s Endocarditis episode has had over this California timeline (not to mention all the surgery bumps due to the terrible RSV season Alberta experience this past winter that created a huge bed shortage that we definitely felt the effects of). Regardless, we’re back on track and I really feel like patience is truly becoming a virtue of mine (and if you ask my parents – that’s quite an accomplishment lol).

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So, what’s been going on this week? WELL, I received a phone call last Friday from one of our Respirologists about a concern we’re having in regards to some ventilator alarms. For about a month and since our last Complex Airway Clinic appointment that we had several weeks ago -- we’ve been dealing with an increase of alarms coming from Evanna’s ventilators. The one of most concern is the “apnea” alarm (she’s trying to breath below a set rate while sleeping…. so I assure you it’s not a “true” apnea situation and she’s absolutely just fine), and so between that AND our CO2 results from our last appointment, we believe Evanna is being “over-ventilated” and growing out of her current settings – which is a very GOOD thing! They originally tried to get us into the PICU on Monday for some vent tweaking…but of course that didn’t happen…we tried again today….and now we’re trying for an admission TOMORROW (trust me, the Respirology team is not happy with ICU communication right now). I am so over this whole “gotta be bumped at least 2 times” before SH#% happens – especially when you consider the bronch and Cath coming up in the next few months that I just KNOW is going to have similar scenarios…. and so I’m currently having a “FML” moment right now lol.

Lastly, Nick has been kept very busy with working on the basement suite (with help from his brother Ryan), and is literally is down there whenever he has a moment to spare. Evanna obviously complicates that, and unfortunately he can only get to it if I’m home to watch her or we have a nurse at the house. It’s still coming along quite nicely (painting is finally done, and kitchen cupboards are all in -- including the countertop and backsplash), but we’ll be so glad when this project get completed and we can finally focus on our own home (and boy do I have lots of ideas that I want to see happen lol….lucky Nick). I’m stuck trying to figure out a simple birthday theme for Evanna’s 3rd birthday (I’m open to ideas – so if you have any, feel free to pass them along!), and overall doing my best to keep my head above water.

Yesterday kicked off HEART MONTH, and while recent events have prevented me from planning anything major to aid in raising awareness, I was still able to get a few projects and collaborations put together –so stay tuned! Currently I have a little contest running with @MIGHTYWARRIORDESIGNS over on my Instagram account, and $2 from all sales of their Heart Collection is being donated to the Stollery Hospital Foundation. Cheers!

xo The Irvine Family

PS. If you powered through and read through this entire post (and somewhat stayed focus without your head spinning from information overload), then B R A V O! Seriously! I know I throw a LOT out there, but I honestly do try my best to break things down for those who aren’t familiar with the medical world (and to be honest – it also helps me to write all our current happenings, as it helps me take all my jumbled up thoughts and arrange it neatly on this blog). If something is still confusing, please feel free to ask questions, as I don’t mind explaining things further!

PS2. I want to thank Jody Frank and her Grade 3 class from Montreal for all the lovely Christmas cards that were sent to Evanna back in December (I think they came JUST in time for Christmas too!). I love it when our story is shared to both help inspire and provide a little perspective in a world that can sometimes be so full of noise. We have been recipients of so much generosity over the years, and no matter how big or how small – each little act of kindness has always been greatly appreciated. Thanks again xoxo