PCICU Day 258 - 266

What a fantastic week we've been having here in Edmonton. While I tend to focus on what we need to do to get Evanna home, when I think of how far we come,  I'm in total awe. Other then weaning her sedation medication, and tweaking her feed and vent settings - morning and evening rounds here in the PCICU have been more of a "social call". Dr. Ryerson has stated on a few occasions that Evanna is DEFINITELY ready to move out of the ICU and it's time for her to go home! In fact, if we didn't have to go back to Calgary, we would probably already be on the floor by now! The biggest change we've seen in Evanna over the last few days has definitely been her whole demeanour. While we could get Evanna to smile once in awhile, we really had to work for it. Now, Evanna is handing out smiles, left, right and centre! She's getting so strong, tries to roll over and holds up her head so well when we sit her up. We also recently did a weight, height and head circumference check and when you compare it to the 22q growth chart, Evanna's in about the 7-25 percentile (thanks Ashley for figuring that out for me), and I believe that's around the 5 percentile on the regular growth chart. Considering everything that Evanna's gone through over the last 9 months here in the ICU, that's not too shabby and I'll definitely take it! So proud of my little girl!

Earlier this week we were finally taken off of isolation, however to avoid any bumps on our road home, the intentivists have kind of asked if we could hold off on going for walks around the hospital as we don't want anything to hold our transfer back to Calgary. Over the last few days, Evanna has been experiencing some minor withdrawals, so they've decided to slow her drug wean even more. At this point there is no rush to get her off of her sedation medication (she's on Hydromorphine, Ativan and Chlonidine around the clock), however, we're down on extremely low doses of the Hydromorphine and Ativan and will probably start working on the Chlonidine soon.
On Wednesday Dr. Cave, myself and the Respiratory Therapy manager had a teleconference with two Calgary intentivists about Evanna's upcoming transfer. Originally we were aiming for this paat Thursday or Friday, but they felt it was in Evanna's best interest to transfer at the beginning of the week verses the end of the week. So with all that being said, Evanna will be transferring back to the PICU in Calgary tomorrow!! We're feeling really good about this transfer as Evanna is just doing incredible, and I can just tell she's ready to go home. We have a few little things to iron out before we will get the big A-OK to walk out of those hospital doors, but I'm sure we'll get there in no time.

So what are those things that are left to do in order to take Evanna home? Well, first is we definitely need to get Evanna's feeding all situated out. The Pulmonary team here in Edmonton is known for being extremely conservative with orally feeding vented kids and pretty much don't even try until they're doing sprints off of the ventilator. There is always a risk for them to aspirate feeds which definitely is not a good thing, but as long as you just do a very small amount at the beginning and work your way up, the risk is decreased. Fortunately, the Calgary Pulmonary team is less conservative and not afraid to give kids a chance. A nurse that works both in the PICU in Calgary and the PCICU/PICU up here in Edmonton confirmed that she definitely noticed that particular difference between the two Pulmonary teams, and from my recollection the only thing that was stopping us from letting Evanna oral feed back in April in Calgary, was the fact that she was still NJ feed (meaning food was being delivered past her stomach), and they just needed proof that she could handle food in her stomach before they proceeded with giving her a bottle. I know there is no guarantee that Evanna will be successful and she may hypothetically need a GTube temporarily, but it was the one thing that she was good at prior to all of this, so I have a lot of faith in her. A trach can change things and swallowing definitely feels different when you have one, but it's only fair to give Evanna a chance to declare herself.

Other then continuing to wean her sedation medication (which we can do from home), is setting up homecare and Evanna's bedroom. Before they let us take Evanna home, we have to have nurses in place to care for Evanna at night. Here in Canada, there are two ways of doing that. First way is to leave it in Alberta Health Services hands, let them hire and train LPN's to look after Evanna and let them take care of it all. Unfortunately there are some downsides to this option -- for example, they won't even begin the hiring process until we're on the floor and practically ready to go home. We've been told it could take about 6 weeks (which means that we might not be home until September!) and we don't really get any choice of who they hire and comes into our home. So with all of that in mind, we've decided that we're just going to do "self-appointed" care. What this means is we are allocated a certain amount of money based on Evanna's needs (she's approved for LPN status based on the fact that she's on a ventilator) and we can hire and train who ever we want too. It's a lot more work in the beginning that Nick and I have to do, but it means we may have an opportunity to take Evanna home a lot quicker. We will have complete say of who is in our home, and over time we can tweak it to fit our lifestyle better. I haven't really put the word out that we're looking for staff, but through word of mouth, we've already had some people express interest or tell me that they might know someone who would be interested. We have lots of connections with friends that are nurses, EMS trained people through Nick, and my cousin is an RT student (Respiratory Therapy and trachs definitely go together!), so I feel we won't have too much trouble trying to find qualified people to look after Evanna at night. While RN's and Paramedics may not be interested as it's LPN wage, I'm hopeful that maybe RT students looking for some experience, LPN's or EMT's needing some work will be interested. 

Anyways - in my opinion, those are the two biggest things that we need to accomplish in order to get Evanna HOME! There are a couple of minor things that have to also have to get done, like converting Evanna's nursery into an appropriate space that will cater to all of Evanna's new accessories (while no parent dreams of making their child's bedroom into a mini "hospital room", I'm going to try and have some fun with it and do my best to keep it looking like a bedroom). My lovely sister actually won me a "Spring Cleaning" service back in May for Mother's Day, so that will definitely come in handy to help prepare our home for Miss Evanna. All in all, it's going to be a very busy few weeks as we help Evanna continue to move forward, continue our trach training, find and hire staff -- train them, and get our house ready. While I do have a goal in mind for a "discharge date" and it's a very realistic one, I know from experience that things may happen to delay that, and we just have to continue to go with the flow. So much is involved when your child is trached and vented, and being discharged isn't a that simple anymore. In the future I definitely plan to blog posts showing Evanna's room, maybe do a video* giving everyone a glimpse of what "trach care" looks like and may even record a "trach change" that is done about every 28 days. While I sometimes get overwhelmed thinking about what the next few years are going to look like for us (say goodbye to spontaneous date nights -- calling up the neighborhood babysitter will be completely out of the question), I know we'll get through it, as we have such an amazing support team of family, friends, church leaders and those following our journey, and I feel like we'll be just fine.

*Speaking of videos, I've recently downloaded this new app called Periscope, which was launched by Twitter not to long ago. It's an awesome tool to do LIVE broadcasts and people who are watching can type questions or comment during the broadcast. I've already done a few, and it's just another unique way to connect with people. Unfortunately the WiFi at the Stollery isn't the best (while I can get onto Facebook and Instagram, I can't connect to Netflix from the ICU), I know my internet connection was a lot better at the children's hospital in Calgary. I have already done a few broadcasts from the Ronald McDonald House and answered some people's questions this past week, but hopefully I can do a quick one from the ICU in Calgary so everyone can see Evanna (which is who people really want to see). Anyways, if you are interested, just download the app and follow me at @kierrai If you miss the live broadcast, you still have 24hrs to view the video after it's been aired. I'm truly addicted and overall it's been a lot of fun to talk with people (think of it as a one-way "Face Time").

Prayers for a SAFE transfer back to Calgary, and that this one will stick! Hopefully 4th time is the charm for us, and that Evanna can stay in Calgary and work towards being successfully discharged!

xo The Irvine Family

Headband from Kristen and Kirby Davis || Blanket from Chalk & Bean Handmade

+  I've partnered with Baby Jack & Co as a "Kindness Rep" in their #spreadthelovey campaign. They make sensory blankets, and have created a way for YOU to purchase one, which will be donated to a family in the NICU/PCICU/PICU. The blankets purchased through THIS LINK (<<--- click there), will be shipped to me, and I in turn will pass them along to families here at the Stollery Children's Hospital. My personal goal is about 50 blankets (between the 3 ICU's here at the Stollery, there are about 40 beds), but I need YOUR help to get me there! Currently I'm at about 20% for my goal, so please let me know if you have any questions, as I would be happy to answer them! {Also remember: Enter code KIND to offset the pre-set shipping on the website. No matter what shipping info you enter, it will be shipped to the donation recipient (me) in 1 bulk shipment}

Family Photos in the PICU

Here's {Part 2} of our family photos done by Jennie of Guenard Photography. Originally Nick thought that it was kind weird to being taking professional photos while in the PICU, but when we were talking about it with our nurse, she stated "well yes, but not many people spend such a long time in here". It was a perfect answer. While I would never wish this journey on anyone, it has brought our family together, made us stronger and we're all that better for it.

"Don't look for new landscapes, use new eyes to see what is already there" - Gerald Causse

{Part 1}

Spread The Lovey

Every once in awhile I get asked to participate in some amazing projects that not only help Evanna, but other medically fragile children as well. We've had so much kindness and support bestowed upon our little family, so when I find a way to give back and encourage other people to do so - I jump at the opportunity. I'm partnering with a company called Baby Jack & Co as a "Kindness Rep" in their #spreadthelovey campaign. They make sensory blankets, and have created a way for YOU to purchase one, which will be donated to a family in the NICU/PCICU/PICU. The blankets purchased through THIS LINK (<<--- click there), will be shipped to me, and I in turn will pass them along to families here at the Stollery Children's Hospital. My personal goal is about 50 blankets (between the 3 ICU's here at the Stollery, there are about 40 beds), but I need YOUR help to get me there! Please let me know if you have any questions, as I would be happy to answer them!

[[Please remember: Enter code KIND to offset the pre-set shipping on the website. No matter what shipping info you enter, it will be shipped to the donation recipient (me) in 1 bulk shipment]]

xo The Irvine Family

Home Ventilator and Progress

Despite the fact that we're on isolation, we have still made a LOT of progress over the past week. Over the weekend we continued to go for more walks, and every time we went for a walk, we would progress to less and less "support". Our first walk last Thursday consisted of 2 Respiratory Therapists, our nurse, a big transport monitor and Evanna had ECG leads on. On Saturday we went with just one RT and nurse, and by Sunday we were able to go with just an RT, no ECG leads, and the transport monitor was switched out for a little SpO2 monitor. Our walks are quite interesting, because Evanna's stroller is accompanied by a lot of "stuff", but then people look inside the carrier and just see this adorable baby. However, it looks like I may have to make a sign about not touching her, and carry a big bottle of hand sanitzer. I'm all for people interacting with Evanna, looking past the trach and vent, and treating her like a normal baby, but they also have no idea what we've had to go through to get to this point, and so I don't need someone accidentally passing something along onto her, prolonging our hospital stay more than it already has been. Unfortunately the trach makes Evanna more susceptible to germs, which means she can easily catch a virus or infection, which overall isn't good for her little heart. I have a feeling that things are going to be very interesting for the next few years while Evanna has a trach, and it's going to be tough balancing keeping Evanna healthy and strong, yet not shelter her from the world.

So why are we on isolation? Well last week Evanna tested positive for Rhinovirus (your common cold), and it actually came as a shock to her intentivists, as she wasn't symptomatic (no runny nose, etc). So they kept a close eye on her and decided she didn't need to be isolated. However, over the weekend, her secretions increased a little bit, they were also thicker and yellow in colour (we usually want to see white secretions). So as a precaution, and to protect both herself and other kids, they decided to put her on isolation. On the flip side, Pulmonology said that thick, more frequent secretions and even a little bit yellow are common for kids at this age  -- because they are TEETHING! In fact Evanna has like 6 teeth that are coming in right now, so it's really hard to determine if Evanna's "abnormal" secretions are due to the Rhinovirus OR just normal baby stuff. Personally I think it has to due more with her teething, as one MAJOR symptom Evanna is not exhibiting for Rhinovirus is a runny nose, but I guess only time will tell. Also, our isolation couldn't have come at a worse time. Months ago I wouldn't have cared if we were on isolation, but we just gained our "freedom", and not even her medical team can agree if she is in fact "symptomatic", and needs to be on isolation. Oh well, just like everything else we've gone through, that "this too shall pass".

So what else have we been up too? Well despite the fact that we're confined to our little room, we have been making lots of progress with Evanna in other aspects. Physical Therapy has been stopping by frequently and working with us on getting Evanna stronger and moving forward. We are rolling her and keeping her in modified tummy time positions, sitting her up with minimal support and getting her up her in tumble chair as much as possible. A few weeks ago, Evanna could only handle about 20 minutes in the chair, and now we're at about 1.5 hours consecutively a few times a day. For the first time yesterday, we decided to get her up on her feet and do some weight bearing for as long as she could handle it. Surprisingly, Evanna did well - but only as long as she had her soother. On Saturday, Evanna was due for a PICC line dressing change, so Dr. Guerra ordered that Evanna have a normal bath, and so that's exactly what we did! When we first put Evanna in the bath, she cried for a few seconds, but once I reassured her that she was fine and sprinkled some more water on her, she began to actually enjoy it. Such a normal thing that many people take for granted, and another "normal" milestone that we're crossing off our list.

Finally - our biggest step forward has been transiting Evanna over to the home vent! We still have some tweaking to do, but that was to be expected. At the moment she's been on it for just over 24 hours, which is a big accomplishment, and so we're praying she'll continue to do well. Her settings are a little higher then what we would like, but with time, I'm sure we'll get those down.

The Home Ventilator!

So now what? Well, we're not exactly sure ourselves. We still have a few days to go before we consider Evanna "successfully" transitioned onto the home vent, but now all conversations are being centred around whether we go to the floor here at the Stollery, or transfer back to the PICU in Calgary and then transfer to the floor there. Each intentivist has their own opinion, but they ALL agree that at this point, Calgary needs to be involved in the decision making, as overall they will be taking care of Evanna moving forward. As for my opinion - well part of me wants to go back to Calgary as I'm starting to get homesick (can you blame me?), and while the Pulmonary team here has been involved, it will technically be the Calgary Pulmonary team that will be her primary care team in regards to her trach and vent and will be the ones looking after her when we go home, and so they need time to get to know her. Also, I feel like Evanna has demonstrated that she is very "stable" and finally at a point that Calgary can handle her. Finally, I need to call the homecare nurse here in Edmonton tomorrow, because I was reassured that it was being set up, even though we are still in Edmonton... however I haven't heard from them in weeks. So my conversation tomorrow will definitely be a a deciding factor for me in what I want to do.

We know Evanna has a reputation in Calgary (she likes to get really sick, really fast), and so to avoid another transfer episode, Dr. Cave has stated that it's just not fair to both the Calgary medical team and our family that we transfer Evanna before she is truly ready. I think that if Evanna can demonstrate that she is can handle the home ventilator fine for a few days, then I believe she's ready. It's definitely going to be an interesting few days as we make a plan for moving forward, but at the end of he day, I'm sure whatever we do decide to do, will be in Evanna's best interest.

Thanks for the continued love & prayers,

xo The Irvine Family

[[PS]] Evanna's stomach flu that she had on Tuesday seemed to be just a 24 hour thing, and as of this afternoon is back to full feeds. They're set at continuous, with the plan to start compressing them again tomorrow morning. 

+ My friend Carly of the Madden DeLuca Foundation is looking to raise awareness for CHD and is launching a project on their website and Facebook page called "I am the face of CHD". If you are interested, please email her at delucacarly@gmail.com with your story of your heart warrior or angel, along with images that may be used. Let me know if you have any questions, as I'm good friends with this family and their amazing foundation (the work they do for local Stollery families in honour of their son is just astounding!), and please share this any heart families that you know!

+ Blog updates are generally done on a weekly basis, but I do daily Instagram (@kierrai) and now Facebook updates for those following closely to our little heart journey. Click HERE or search "The Irvine Home // Evanna's Special Heart" to find our Facebook page.

+ Tomorrow is the LAST day to order "Special ❤'s Need Special Love" t-shirts. If we don’t meet the minimum amount needed to place the order, we will have to refund everyone who already bought one. $8 from every shirt sold will be added to the money raised from the auction, and $2 will go to CHD Research (particularly the Canadian Congenital Heart Alliance). Click HERE or go to this website --> warriorgear.storenvy.com to order yours. This is the ONLY time we will be selling t-shirts/tanks, so if you want one, put your order in as soon as possible!

Evanna's Birthday by Guenard Photography

I believe since November, my good friend Jennie of Guenard Photography has been asking if she could come take photos of our family in the hospital, as way to help document our journey. She also happens to our wedding, engagement, newborn and family photographer, so I definitely trust her work. For awhile I said "not yet", as I didn't feel it was appropriate to take professional photos while Evanna was still technically intubated. It also didn't help that every time we are in Calgary, we ended back up in Edmonton just as quickly as we came. Well, timing finally alined, and we were able to take some family photos for Evanna's birthday. This will be {Part 1} of a two part series, with this post focusing on the birthday details, while {Part 2} will focus more on the family photos. Hope you enjoy!

Thank you so much to everyone that mailed Evanna a birthday card. Due to circumstances I still haven't had a chance to count how many we actually received, but one things for sure - we got a LOT!

Decorations made by Lovely Little Things

From Jess Jeanson

Bracelet: Elaine Baker Toy: Danielle Browning

×× Stay tuned for {Part 2} coming next week! ××

Our First Walk!

So on Day 249 in the PCICU, Evanna went for her very first walk in over 8 months! I was originally going to wait until her home vent came in before attempting such a task, but it still hasn't arrived (we've been promised that it will for sure be here by tomorrow), and I just couldn't wait any longer. This was actually a milestone that we were working towards back on Mother's Day when we were in Calgary, however, Evanna obviously had different plans and she ended up going for a different ride that day instead (oh you know, just a STARS helicopter ride).

This morning we learned that her home vent still hadn't arrived and I kindly voiced my disappointment with our nurse. She stated that we really didn't have to wait for the home vent, and that as long as an RT was available, we could go for a walk with the hospital ventilator. So this afternoon, once the RT's were all done their breaks, I raced out to our car, which had our stroller in it (in fact, I have left Evanna's stroller in our SUV for the past 8 months, always hoping that one day we'd get to use it) and raced with it back to the ICU. We dressed her up, transferred her over to the stroller and left on our little adventure! We just did a simple walk up to the Healing Garden on the 4th floor and hung out there for a little while. We took pictures, let Evanna look around and let her enjoy the view. After about 40 minutes, we could tell Evanna was getting pretty tired, so we headed back down to the 3rd floor and stopped by the "fish tank" that's just outside of he PICU before we ended our little tour. I can't express how awesome of a feeling it was to finally put Evanna in our stroller and push her around. It's just a normal thing to do, and something I have been yearning to do for an incredibly long time. Hopefully this is a start to even more walks, and just another step towards taking Evanna home!

xo The Irvine Family


+ I'm aware that many people who follow us and read this blog are Heart Families themselves, and so if you are, this message is for you! My dear friend Carly of the Madden DeLuca Foundation is looking to raise awareness for CHD and is launching a project on their website and Facebook page called "I am the face of CHD". If you are interested, please email her at delucacarly@gmail.com with your story of your heart warrior or angel, along with images that may be used. Let me know if you have any questions, as I'm good friends with this family and their amazing foundation (the work they do for local Stollery families in honour of their son is just astounding!), and please share this any heart families that you know!


+ I only do blog updates every 2 - 6 days, but I try my best to do daily Instagram (@kierrai) and now Facebook updates for those following closely to our little heart journey. If you want your daily fix of Miss Evanna, click HERE or search "The Irvine Home // Evanna's Special Heart" to find our Facebook page.


+ Tomorrow, @compassionauction hosting an auction for us on Instagram, and will donate all of the proceeds to our family. Follow @compassionauction on Instagram to get in on the action.

I'm blown away with the support received, and the donations up for auction are slowly getting posted. There are some pretty incredible items available to bid on, and we're optimistic that the auction will be a huge success. Here's a small sample of what's available, so make sure to ✖✖FOLLOW✖✖ @compassionauction and particular TOMORROW!



+ Compassion Auction has also designed and created some amazing t-shirts inspired by Evanna. For every shirt sold, $8 will be given to our family and $2 will be given to the Canadian Congenital Heart Alliance for CHD research! They are currently taking preorders, and will only be submitting an order once on June 16, which means that all orders have to be in by ✖✖June 15✖✖ There is a minimum of orders that we have to have, and if we don't reach it, the shirts will NOT be ordered and you will be given a refund. Here's what they look like, so click HERE to order yours!