|Thanks Great Aunt Vikki + Jordan for the beautiful silver bow!
When I decided to publicly announce Evanna’s GTube surgery date, I was aware that there would be a risk of things changing. When you work, live and breath healthcare – you learn real quick the inner workings of it, and how the system works.
Unless a procedure, test or surgery is an emergency, things have a tendency to get bumped (generally for other emergencies) on a regular basis. I can’t tell you how many surgeries (I can for sure think of two at this very moment...both her first open heart surgery and her first diaphragm plication), tests (CT’s, xrays, etc) and procedures (bronchoscopies) that we experienced bumping. While there was a lovely opening for us on December 31st for Evanna’s GTube, just a day later, the clinic called me realizing we had bit of a hiccup – we need an anesthesia consult! You see, this will be Evanna’s FIRST surgery here in CALGARY at the Alberta Children’s Hospital. The other 7 have ALL taken place up in Edmonton, and not only are they the heart experts, but they know Evanna pretty darn well (and in return, I know quite a few of the anesthesiologists by name too). So while this is a fairly straight forward surgery (let’s just say that out of all of Evanna’s surgeries, Nick and I are placing this one at the bottom of the list of ones to be nervous about), Evanna is “still Evanna”, and on paper she freaks people right out! So before we step foot into an OR here in Calgary, they want a consult with anesthesia done first. I definitely don’t have a problem with that, as it’s better to be safe than sorry, but I’ll probably just tell them to get a hold of her Stollery records, and even call Dr. Cave (he’s one of the main pediatric anesthesiologists, head of the PCICU AND our primary intensivist up in Edmonton), as he knows Evanna VERY well. We understand there is always a risk when going under anesthesia, and being that ACH doesn’t deal with heart babies too often, I definitely understand them being extra cautious. We’ve never had a problem in the past, so I’m sure once they double check everything, we’ll be set to go. At the moment we’ve been rescheduled for January 14th, so that’s still not too far away.
|Evanna watching "Frozen" while getting an ECHO done
|12 Lead ECG (EKG)
Today we had another Cardiology appointment. Our cardiologist just wanted to have Evanna checked out before the holidays (her ECHO continues to show Evanna remains stable), and talk about New Year plans in regards to her heart. Dr. Fruitman presented Evanna to the Western Canadian Conference last week, and it was decided that before they determine a Cardiac Cath is necessary at this time, they want some new imaging done (in the form of a CT Angiogram) to see what her collaterals have been doing the past 7/8 months. Back in May, her collaterals (the tiny vessels that Evanna’s body created to get blood from her heart to her lungs) on the right were doing okay, and so they want to see if they need any further dilating or to just left alone. The collaterals on the left are definitely VERY concerning, and on most days I don’t like to think about it. They were incredibly narrow and Dr. Rutledge couldn’t even get a wire through them last time – meaning they are at a huge risk of occluding (blocking off). While the medical team isn’t too hopeful that there will be much change (and they could already be blocked off), I’m still holding out for a miracle. Again, when people look at Evanna, they only SEE her respiratory issues, but that will resolve – it’s her heart that is and will always be our biggest concern. So I know MANY people keep Evanna in her prayers, and if you want the ONE specific thing that is the MOST important to us – it’s for her collaterals to GROW. Nick and I are not unrealistic, but we’re still in a place of hope and this show is far from over.
Minus our worries about her left collaterals, Dr. Fruitman and Patty (our main Cardiac RN) are just thrilled with Evanna’s progress since we’ve been home. They think she looks absolutely amazing and continue to compliment on a job-well-done on our end as her parents and advocates. With our new lower concentration of calorie intake, Evanna has lost weight…but that’s actually okay! Between September – November, Evanna’s weight just skyrocketed, and was being overfed. So we diluted her formula and hope she relatively maintains her current weight while we wait for her length to catch up. Last night, Nick’s mom even noticed that Evanna doesn’t look as “puffy”, and trach care isn’t as hard to do, as we can get to her neck to clean her tracheotomy. Most heart mamas reading this will probably be weirded out that our “heart baby” is gaining too much weight, when normally they have the opposite problem…but it’s because Evanna is supported by a home ventilator – so she doesn’t require as many calories, as her body doesn’t have to work as hard. Basically it’s a tough little balance to determine what the best level for Evanna is, and it’s going to be ever-changing for years to come.
We didn’t change up any of her meds, but with an upcoming surgery, we just want to leave things as they are until after January.
We didn’t set up a new Cardiology appointment yet, but Dr. Fruitman is going to talk to the general surgeon and see how long he thinks we’ll be admitted for the GTube surgery, when we think doing the CT Angiogram will be best (either during the same admission, or a separate visit all together), and whether Anaesthesia needs a new ECHO (even though we just did one today) before her GTube surgery in 3 weeks.
On our way home, the Anaesthesia clinic called and scheduled a consult for the second week of January, and minus the CT Angiogram timing, everything is all set for a busy January.
xo The Irvine Family