So before I delve into our last appointment I thought I’d start out with a bit about how recovery has been the past few months. Everly has a remarkable memory for things that hurt or don’t go as she plans – and although many of her non-surgical procedures were sedated, there were a couple that she remembers and they traumatized her and continued to haunt her memories and taint her normally sunny demeanour. She healed perfectly physically – scars are fading, ribs only hurt for a couple of weeks, back to playing like normal. But she had a couple of months of crying at random times daily and nightly (not nightmares thank heavens) but she couldn’t explain why she was crying. She occasionally would say it was because of her neck (the IV and stitches that were taken out with no sedation that hurt her very much). And she was losing her temper quickly and would display awful fits and throw things, pound her fists and scream – she wanted me to leave her alone during these times, and it was totally out of character for her and was hard to see. Luckily though, she slowly crawled out from under it and is back to herself now. The only things different after the Fontan at this point are her warmer hands and feet, and her pinker nose and lips!
On to her appointment:
This past Thursday Everly had her second cardiology follow up appointment with Dr. Hornberger in Edmonton. We were the first appointment of the day at a dark and cold 7:45am. That meant we needed to stay the previous night in a hotel and Everly was so excited for that! She’s always looking forward to flipping through the ‘bible book’ the hotels sometimes supply, and it’s always a little treasure hunt looking for that – books have always been by far one of Everly’s favourite toys 😊 It wasn’t ideal to need to travel the three hours to Edmonton in the consistently -40 windchill, and my car battery died the day before we left – which was a luckily timed misfortune, so we changed plans and took my moms car and it was smooth sailing with no one losing any fingers or noses to the cold.
All of Wednesday I was consistently preparing Everly for the ECG that she hates (her last appointment she had an unreasonable crisis for that test). I always tell her the better she cooperates, the faster it goes – which is always true in these sort of cardiology tests. I tell her I will take the stickers off slowly and carefully, that they have to stay on longer if she’s fussing too much, to take deep breaths and listen to my voice. And she appeases me and fools herself into thinking that will all work. So by the time we finished getting her weighed and measured at Thursday’s appointment (28 pounds, 36.77 inches) she was voicing loudly how she was excited for the ECG, that she was so brave – all a quite false bravado lol! She knows that is always the first test, but when we went to the echo first she was elated! She gets to watch a movie for that test (and talk the tech’s ear off), so she’s come to like her echos. This time the technician taught Everly a bit of what she was seeing on the screen and she was pretty interested in that. Everly had also mentioned that she hates her ECG test and the tech told her that she could ask if she HAD to have one – well that was it for Everly, she was SURE she wasn’t getting one…and she didn’t!!!! Dr. Hornberger asked her if she’d rather get one that day, or one FOR SURE in six months. My girl lives in the moment and had not a second of hesitation in saying, “NEXT TIME!” hahaha!
Dr. Hornberger is always so happy to see Everly, and when she noticed Everly had brought her Mulan doll she started singing 🎶Let’s get down to business, to defeat the Huns🎶 And Everly instantly threw her palm to her forehead like she was embarrassed to death haha! Dr. Hornberger knows Everly’s sense of humour goes that way sometimes and we all laughed and joked about the teenager I’m going to have to deal with someday.
She told us that the echo showed that Everly’s fenestration (the tiny ‘pop off valve’ in her Fontan) was closed – which is what we were waiting for to stop warfarin. And she said we would do three more months of warfarin and stop it in April – um, no that wasn’t our plan…so I said that Kid Clot was waiting for that cardiology appointment for the go ahead to stop. So she called them right then and they decided she could be done warfarin and back to aspirin instead. I couldn’t give them that INR meter back fast enough – no more finger pokes, phew! Her daily meds at this point are synthroid, enalapril and aspirin – a pretty small line up for our heart girl 😊
And Dr. Hornberger is enthusiastically happy with Everly’s recovery both inside and out. So Everly and I both would call that appointment one of our best ones to date 😊
Our Hearts Wish 