Saturday, May 16, 2015

Cardiac Cath Plans

I feel like it's been a week of "when it rains, it pours", and I've only just begun to process everything that's happened. Thankfully Evanna has recovered and is slowly on the mend. At the moment, we've almost got all her IV sedation medication back to oral, and they have been able to make some medication decreases. We were so close to coming off of the hydromorphine and ativan, but when her health deteriorated quickly last week, they cranked everything up full force.

So back to the "when it rains, it pours" comment.... not only did we have to deal with the quick transfer back up to the Stollery Children's Hospital, on Tuesday night I accidentally left my wallet in the healing garden here at the hospital. Instead of turning it in, the person who "found" it, decided to try and make as many purchases as possible before it was too late. Thankfully our bank caught onto it very quickly and we were able to shut down all of my accounts in a timely manner. It definitely has been a pain in the butt to deal with considering our situation, but we've had so many people help us out, that it hasn't caused too many headaches. I was able to borrow some cash from another PCICU parent for a couple of days and some family members were able to arrange to bring up some ID for me so I could obtain another debit card and have access to our bank accounts. Our bank was incredibly accommodating, and after explaining the situation, they sent me a new credit card to our hotel within 2 days! I still have to replace a few more cards like my drivers licence, but the police officer said to just concentrate on my daughter and do it later next week. With the police report that I filed, he said I should be just fine and won't run into any problems if I get pulled over.
Finally I had an anonymous birthday card for Evanna dropped off to the unit from a fellow heart family. It was filled with some gift cards, including one to Winner's so I could go buy myself a new wallet to replace my stollen one and some scratch tickets to "help turn my luck around". It was the sweetest thing, and I'm just blown away with how many people stepped up to help our family when we ran into a bit of trouble. Between another heart family, the Heart Beats Association in Calgary and the Ronald McDonald House here in Edmonton, we've had many envelopes full of gift cards and some cash to help cover what was lost. Not to mention the many offers of meals and money from all over to make sure that this incident wouldn't get in the way of the most important thing - Evanna's recovery.

The last thing that was kind of hard for me to deal with is that Evanna has been scheduled for a procedural Cardiac Cath next Thursday (May 21). It's not as invasive as an open heart surgery, but Evanna's previous two caths have only been diagnostic ones - this one they actually want to do some things to her heart. I've tried my best to explain Evanna's anatomy in the past (click on the "Heart Journey" tab on the far right hand side of this blog where I try my best to break down Evanna's diagnosis), but basically what's makes Evanna's heart so complicated and severe is the fact that she wasn't born with a pulmonary artery. Instead her heart grew tiny little collaterals that take blood from her heart to the lungs where it gets oxygenated. Unfortunately collaterals have a tenancy to narrow, and Evanna has narrowing in multiple spots in all of her collaterals. They want to do a cath to try and balloon some of those narrow spots. It's an extremely delicate procedure, and I'm both annoyed that we have to wait until next Thursday to do the procedure, but also just as nervous as if it were an open heart surgery.

So the goal is to keep Evanna well and stable until Thursday, do the Cath and then I'm really hoping we can transfer Evanna back to Calgary as soon as possible and get back to where we were in our journey to discharge. I've gotten a few comments and questions as to why we just don't keep Evanna in Edmonton (I'm guessing from the outside looking in, it definitely seems like we can never leave Edmonton/Stollery) but in order for us to actually take Evanna HOME, we need to be in Calgary at the Alberta Children's Hospital so we can actually set up homecare. Homecare setup involves so many different disciplines and there is just so much that has to come together to ensure our home is a safe environment for Evanna. For example, when we're actually close to discharge, we will have to do a number of day and weekend passes at home to get comfortable with Evanna being at home with a trach and kind of prove that everything is good to go. Dr. Ryerson once stated that Nick and I are an ideal "trach family" due to both our medical knowledge in the home (Nick being a paramedic and all), and how involved we are with her care. Though we're an ideal "trach family", Nick and I have to be trained to care for Evanna (which we've already been doing), homecare nurses have to be hired and trained, supplies have to be ordered, Evanna's room has to be rearranged and setup into a suitable situation for her and outpatient clinics have to arranged and appointments have to be scheduled. So while we kind of wish we could just stay at the Stollery until Evanna gets discharged, unless we plan to relocate to Edmonton (which has definitely come up in conversation and joked about often), we NEED to transfer back to ACH in Calgary in order to get everything set up and be able to take Evanna home.

Thank you so much for the amazing support and continued prayers for Evanna. Please specifically pray for Evanna to stay well this week for her Cath, and for the Cath to go well without any complications.
People constantly ask us what they can do for our family, and so when we actually needed some help, it was truly touching to see people step up to the plate and be there for us.

xo The Irvine Family

» I haven't had time to mention it with everything that's gone on in the past week or so, but I just have to talk about a really awesome email our family received about 2 weeks ago. I don't want to state any names, but through friends of friends and some awesome connections, we received a video "birthday card" message from our city mayor! Calgary is a pretty big city, and so we feel incredibly honoured that our mayor would take the time to record a sweet little message to Evanna and send it to us. However, to keep the integrity of the video and respect certain wishes, we've been asked NOT to publicly post the video. So if you wanna see it, you'll have to come find me personally (sorry to our nonlocal followers) and ask to see it for yourself!
Anyways, those who were involved know who they are, and so to you, I say Thank You!

Some Reminders:

+ 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.

+ Earlier today I announced a very special event happening on Instagram. @compassionauction has graciously asked if they could hold an auction for us, and will donate all of the proceeds to our family. It's happening on [[JUNE 12]], so if you would like to get in on the action, please do the following steps:

1. Follow @compassionauction on Instagram to get in on the action
2. Tag any friends and encourage them to participate as well!
3. Tag any of your favorite IG/Etsy shops that you think would be interested in donating.
4. Most importantly »» be sure to bid and participate on June 12!!

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