Thursday, May 28, 2015

3D CT Results

The past week has been a compilation of waiting, waiting and more waiting. First it was "wait until Tuesday" where they would discuss Evanna at the weekly Cardiac Conference, however, that then turned into "wait until Friday" so our surgeon could have more time to look at all of Evanna's images (not a bad thing, as this isn't a decision to rush.... but all the waiting was definitely hard for me). 
During all of this waiting, we experienced some ups and downs in regards to Evanna's ventilation. We tried switching her diuretics (it's medication that helps you pee more) from IV to oral over the weekend, however Evanna's body didn't respond to it as well, so she became fluid overloaded and swollen, which made it more difficult for her to breath. We ended going back to IV diuretics for a few days, but this morning Dr. Aditia switched Evanna back to oral, but at a much higher dose. I'm going to keep an eye on Evanna's fluid balance over the next few days, and if she starts to get positive again I'll make sure they fix it quick, as I don't think Evanna handles being too "positive" very well.

Last Friday, Evanna's special trach that I've been requesting since her tracheostomy surgery finally came in! It's soo nice and I feel it will help her get strong and mobalize much easier. Though Evanna technically got a trach change the day before during her cardiac cath, I was too excited to wait and did a trach change that very day. All the staff have agreed with me, and think the trach will be much better for Evanna and that it looks amazing!

Finally, Evanna has been successfully converted to NG feeding (food goes through a tube and into her stomach instead of her intestine), which means that as soon as Evanna passes a swallowing test, we will be free to restart bottle feeding again. This has been a huge thing to me, because considering Evanna's incredibly long list of complications (heart, airway, etc), this was the one thing that Evanna had going for her and was really good at. Occupational Therapy doesn't think she has any oral aversion and we're pretty optimistic based in her history, that she will do well. This is obviously not a guarantee, as unfortunately the trach makes swallowing feel a bit differently, but hopefully Evanna will not let that get in the way and persevere!

Today has been a very busy day and I was already exhausted by lunch. I came extra early to make sure I didn't miss my opportunity to see Evanna's heart in 3D with Dr. Rebeyka. When I arrived, they were already rounding on Evanna, and though she had a great night, Evanna spiked quite a temperature this morning. Dr. Aditia ordered cultures on everything, and for all her lines except her PICC line to be taken out (her head IV conveniently fell out last night). This meant they had to convert any additional IV medications she was on to oral ones, but because she was on a very low dose of hydromorphine, switching that and the lasix (a diuretic) was relatively easy. 
Just after 9am, Dr. Rebeyka came and got me and lead me down to the radiology lab. What an experience! It was so surreal to not only see Evanna's heart in 3D (if you want to get a better idea as to what I saw, watch the video I posted below), but be in a room full of so many smart minds and hear them discussing Evanna and her heart. There was Dr. Rebeyka, Dr. Noga (she's the radiologist who came up with this idea of a 3D CT and make it happen), all her colleges, and Dr. Rebeyka's surgical residents. 
Basically through conversations, it was decided that while a surgery may benefit Evanna, they're not sure if now would be appropriate. They feel Evanna's oxygen saturations are still very good considering her large VSD, and that we need to work on her ventilation needs and continue to tweak those. Though I originally thought Evanna should have surgery a few days ago, after seeing everything and having it all explained to me, I feel much better about holding off for now. Once the intentivists feel like she's ready, Dr. Rebeyka agrees that we should transfer Evanna back to Calgary, and continue to work towards discharge from there. 

So that's where we're at. I don't have a day, other then "next week", and despite a busy morning, we've had a pretty relaxing afternoon. Once our nurse removed all of Evanna's lines, she asked if I wanted to hold her again, and so that's exactly what I'm doing right now (she's sleeping on me, so I'm typing and posting this from my phone). Compared to a few days ago when Evanna did not enjoy being held, she is quite relaxed and sprawled across my lap!

xo The Irvine Family

+ On [[JUNE 12]] @compassionauction has graciously asked if they could hold 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. If you have something you would like to donate, email them at In the email include a photo of the item or your logo for store credit, a short description of your item, the retail value, where you are willing to ship the item too, and if your including shipping or how much shipping will be.
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 (we are still in need/search of items for the auction). 
4. Most importantly »» be sure to bid and participate on June 12!! 

+ 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.

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