Back to the Heart of the Matter

I get so used to this lull in medical “intrusion” that I often forget I have a child with a life-threatening heart defect. After the first year of her life, thinking of it every day, it is such a nice change. But the heart of the matter is, there is still something the matter with her heart. And every once in a while we have to face that.

Gabrielle had an echo scheduled for March before we even left for Mexico. While in Mexico, she began quite ill with some kind of stomach infection which required her to get a shot. We knew then that she was not over her phobia of doctors. When we returned from Mexico, I called the doctor’s office to change her echo appointment to a sedated echo appointment. I knew she wouldn’t be ready to face an hour long test like an echo while fully awake.

The day before the echo, she and I talked about how we would go to the hospital tomorrow. How there would be absolutely no needles. And how it would be quick and then we would be able to get a fabulous lunch at her favourite little cupcake tea house. We also stressed that she would not be able to eat breakfast. The thing with sedation is that there has to be significant fasting beforehand. I was dreading this.

Gabrielle was an absolute “champ” (as she called herself.) She never complained or whined that she couldn’t eat though she asked a couple times for food. She didn’t seem nervous at all as we pulled up to the hospital and she was talking positively about the doctor the whole morning on the ferry.

As soon as we entered the hospital and we had to weigh and measure her, she started shaking in my arms. It was clear that the memories were flooding back to her. The sedation they used was a different medication than usual and it didn’t put her completely to sleep which meant that there were a lot more tears than normal. But as soon as the medication and the echo was done, a couple hours later, she was visibly relieved.

As for the results of all that drama, her next surgery looks like it will be around the time she’s entering or done preschool. They said a guess of age 4 or 5. She does have moderate narrowing of her pulmonary artery and she has leaky valves through the conduit they put in. Her oxygen saturation is (to quote the nurse) “100% when resting, 96% when furious.”

That is all very good news.

The news that was less than ideal was that they want to see us more often. She should not become symptomatic before the next surgery and to assure that is the case, they want to see her every 6-8 months. It’s a shame but I know it is for her own good.

On the way back, Gabrielle was becoming more stable on her feet but could have acted a good rendition of “What do you do with a drunken sailor” and we ran into friends taking the same ferry as us. Their three year old had cancer last year and still has several tests he has to do every month or two.

The mom asked casually, “Oh, what were you in town for?”
When my answer was “A sedated echo” she had the most perfect response.

“Oh I hate sedation appointments!”

My sentiments exactly.

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About Amanda

Living a simple quiet life on the Gulf Islands, BC.

7 Thoughts on “Back to the Heart of the Matter

  1. Thanks for the update. Wish I could give you a big hug. I’m glad they are taking care of her. Much love to you all.

  2. So happy to hear she is pink! I will continue to hold your beautiful wee adventurer in my heart and prayers.

  3. Danielle on 29 March, 2013 at 4:10 pm said:

    What a brave Brie-nut and Mommy. So thankful for you both.

  4. Monique on 29 March, 2013 at 6:39 pm said:

    You really are the bravest mommy I know – I have SO much admiration for you…I have a LOT to learn!!!

  5. I totally second your feeling like you just want to forget about your kid’s heart issues even for just a little while. Lately, people keep telling me how “healthy” my daughter looks…she’s been repaired for 6 months now…all I see is normal kid until someone reminds me that everyone else sees her as some potentially delicate flower.

    And props to you for recognizing what your girl needed at the doctors, even though it was not the progress you’d hoped for. Glad she got (mostly) good news.

    • Thanks Lea. Its always nice to know there’s someone else who has done this too. I don’t know how it was for you, but there was such a noticeable difference in Gabrielle’s colour after surgery that when people said she looked healthy, I knew she didn’t look Blue anymore. It was always such a joy to share. No not blue, pink!

  6. Christy on 30 March, 2013 at 3:05 pm said:

    Awwhh, poor baby girl! But so brave!

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