Not that I'm complaining in anyway, but it's definitely been a tad harder getting these blog updates done then it use too. With Evanna being so much more active, she has required more of our attention - but I wouldn't have it any other way! My blog is still a priority because while I do mini updates on Instagram and Facebook, this has been my main tool for documenting this journey, which is so incredibly important to me for both an outlet, but also for Evanna. I can't tell you how many times I've gone back and referred to the blog when a doctor has asked me a question about Evanna, and I hope it will be a great resource for HER when she grows up.
So last week it was decided that we weren't going to proceed with another surgery and that plans for a transfer back to Calgary were in the works. However, over the weekend, our intentivist Dr. Aditia suggested that maybe we stick around for a little while longer. He and the other PCICU intentivists thought that maybe if we made a little more progress here in Edmonton, we could eventually go back to Calgary and avoid ANOTHER emergency transfer back to Edmonton. I said that was all fine and dandy, but I didn't want that to get that in the way of setting up homecare. So we all agreed to wait until the weekend was over and Nick to come back to Edmonton before we made any decisions.
While part of me wants to go back to Calgary (be home, comfortable bed, see friends and family, private ICU room, etc), we've been doing this for so long now, so what heck - what's another 3 - 4 weeks? Hospital transfers are a lot of work and they're not easy on the child either, so though we're taking up a valuable bed here at the Stollery, Evanna's medical team feel it's best that we stay here a little longer.
On Monday we involved the Edmonton homecare nurse and the assist team, who all reassured me that we could start setting up homecare from Edmonton. At some point we still eventually need to get transferred back to Calgary, as we need to prepare our home for all of Evanna's needs and also have the opportunity to do day and weekend passes before we officially get discharged (it's a way to help us ease into our new life).
We also meet with the Pulmonary team for the first time here in Edmonton (we have already meet the Calgary team), and we've had a few discussions on what they would like to see happen moving forward (some of which I agree with and some I don't). First was to continue to decrease some of Evanna's hospital ventilator settings, especially her oxygen. Next is to get a home vent in for Evanna and transition her over to that. Both of the Stollery's PICU's Trilogy Home Ventilators are being utilized by other patients at the moment, but because we know Evanna will be going home on a vent, they decided to just proceed with getting the one she'll take home with her, and we anticipate it to arrive around next Wednesday.
In regards to feeds, this is where I'm running into some problems. Evanna is officially being bolus feed vs continuous feeds, and we're super close to being at our goal of 30 minutes (as of today, Evanna gets her feeds over 45 minutes). However, the issue of bottle feeding is where I'm having problems. Lots of kids with tracheostomy's don't feed orally and there can be multiple reasons for that - such as never eating by mouth before, gastrointestinal problems, history of aspiration, etc. However, it's not impossible, as I have many trach mom friends who's children take a bottle and eat solids, so I'm not backing down on the situation. Even Dr. Aditia agrees with me, and that we should eventually at least try and let Evanna feed orally, as based on her history (she was an EXCELLENT bottle feeder for the first 5 months of her life) there is a good chance that Evanna could do it. On the other hand, the pulmonary team wanted to see Evanna transitioned to the home ventilator, not be cuffed and already handling trials off of the ventilator before we try bottle feeding. While I can wait to transition over to the home ventilator as that's happening next week, I don't know how long it'll take to get Evanna from a cuffed trach to a non-cuffed trach and doing trials off of the ventilator. I have a friend who's little girl, who like Evanna, is very complex medically, and she drinks from a bottle while on the hospital ventilator and cuffed. In fact, I just came across this article about a mom who breastfeeds her vented child! Anyways, just like the lead and trach issues that we've had in the past, it looks like I have another little "battle" to fight. I know they only have Evanna's best intentions, but so do I, and so I at least want to try, even if it means taking really small steps. Dr. Anand is on for the next week, so I'll be talking to him about my two goals (home vent & feeding) and hopefully he'll help me and my little mission.
The last several days we've been starting to work with Physical Therapy a lot more, and they've even come up with some goals for us to work towards. We're rolling Evanna on her sides and getting her to hold those positions for a minute or two, we're sitting her up and and also assisting her in that position, and finally we're trying to get her up in the "tumble-form" chair at least a couple times each day. Nick and I have already seen improvements in Evanna and she is slowly, but surely getting stronger. We held her up the other day, and we couldn't believe at how well she was holding her head up! She still has a long ways to go, but we're taking small small steps in the right direction.
Lastly we've been dealing with Evanna having some terrible "episodes" a few times a day since about Thursday, and it's a cause for concern. Evanna will go from doing incredibly well, playing with her hands and toys, to her thrashing around in her bed, her CO2 climbing to 100 (normal for Evanna is about 40-60), and dropping her O2 down to around 40. Her bed is then suddenly surrounded with multiple people trying to bag and suction her as fast as we can. Basically Evanna will go from having no secretions to copious amounts, making it incredibly hard to breath and she starts to panic. It's so heartbreaking to watch, and she gets the most scared look in her eyes. What resolves the situation is pumping sedation medication into her to help her calm down and bag and suction her until we get all the secretions out. An hour later she'll wake up calm and content as if nothing happened. It's exhausting and is kind of preventing us from moving forward at the moment. They're trying to figure out what's causing it, but at the moment we don't have an answer.
Yesterday we've officially hit the 8 month mark here in the ICU. I don't know whether to smile that we've made it this far, or cry. I guess I'm just going to go with "what doesn't kill you, only makes you stronger" attitude at the moment. Thanks for the continued love, prayers and support!
xo The Irvine Family
+ On [[JUNE 12]] @compassionauction hosting an auction for us on Instagram, and will donate all of the proceeds to our family. Please do me a favor and follow these steps:
1. Follow @compassionauction on Instagram to get in on the action.
2. Tag any friends and encourage them to participate as well!
3. Most importantly »» be sure to bid and participate on June 12!!
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 participate on June 12!
+ 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! I will definitely be placing our order today, so feel free to purchase one yourselves! Here's what they look like, so click HERE to order yours!
+ If you take a look on the right hand side of this blog, you can see that I have set up a You Caring page to receive funds from the auction. However, it will also accept monetary donations that anyone may wish to contribute. While most things have been covered during this journey, the length of our situation has dug into our savings just a little bit. This is why when @compassionauction contacted me asking to do an auction on our behalf, I couldn’t turn it down (I liked the idea of people receiving something in exchange for a donation). Overall, the amount raised isn’t really as important as the support, love and prayers we have received. So while donations are appreciated, more than anything we ask for your continued prayers and support. The account will only remain open and active until June 30, 2015.
+ We now have an official Facebook page! 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.
+ 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 firstname.lastname@example.org 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!