Thursday, June 18, 2015

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 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 --> 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!

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