Done with hospital stuff…for now! #lifeaftertransplant #transplantlife

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We have spent a lot of time at BC Children’s Hospital these past few weeks for Addison’s Transplant Clinic and round up of annual tests. Very happy to say that Addison is DONE…for now!

This week was the biggest bad boy of them all…an angiogram in the catheter lab, with a little extra on the side. We were scheduled to go in at 10:15am on Monday, but due to delays, we didn’t end up going in until 12:45pm! Keep in mind, this is a full anesthetic procedure in the OR, so no food since the night before and no liquids from 8am that morning. Needless to say, Addison was very cranky and unhappy by the time we got called in. I was too, since I also didn’t eat to be in solidarity with her. Aaron cheated and had breakfast with Charlie, which I guess is a good excuse.

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At the new hospital, only one parent can go in to the OR and Addison wanted Momma to go with her. We walked down there together, holding hands. She was getting anxious too, fueled by her lack of fuel, and by the time we got to the OR and I helped her on to that big table, surrounded by so much equipment and people in masks milling about, she was definitely scared. The numbing cream they put on her hands three hours prior had worn off by then, so the anesthesiolgist had to use freezing spray, which also didn’t go over too well.

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I hate that moment. I am holding Addison, hugging her as tight as I can while they insert the IV, hating her stress and anxiety. It just sucks. This time, she also got a mask to help put her to sleep. I squeezed her hand and she looked at me, blinking, slowing down until her eyes closed, and then she was out. I always feel like a piece of my heart stays in there with her as I walk away, and I’m not quite complete until the moment I see her in the recovery room, eyes blinking slowly again, trying to wake up.

Recovery wasn’t fun. I’ll just leave it at that. Finally, at 6:15pm, more than nine hours later, we were ready to go home. Addison opted to leave in a wheelchair, but funny, as soon as she got in the car she insisted she was ‘much better’ and was absolutely good to stop for ice cream on the way home. That was a damn delicious sundae we shared.IMG_3491

The best part is her coronary arteries looks great, heart is looking good, and the optical coherence tomography or OCT (a special kind of imaging that produces high resolution pictures) showed no thickening of the intimal layer, the innermost layers of the artery wall. Hardening of the arteries is, unfortunately, one of the problems heart transplant recipients might have to face. It is a leading cause of death for long-term transplant patients, hence all this vigilance and monitoring. The OCT is a new imaging technique that is actually being evaluated at BCCH as part of a research project. When we were asked if Addison would take part in a study, I couldn’t sign the paper fast enough. YES!!! Pediatric transplant research in action!!!!

We also had a GFR last week to check her kidney function because those drugs are toxic to kidneys, amongst other bad side effect. That day was only three hours long, but there was another needle involved. 😦 Fortunately, the day overall was actually quite relaxing. We had time to hop over to Van Dusen for a lovely afternoon tea in between blood draws. So civilized!

I did have a bit of a panic attack when we got Addison’s GFR results. 85. It’s still considered ‘low normal’, according to our transplant team, but it was more than 110 two years ago!!! That seems like a huge drop in kidney function right?? Our cardiologist managed to talk me down from the ledge. He says anything in the 80s and up is absolutely ok and the GFR is only a snapshot of kidney function on that day. It fluctuates all the time. Doesn’t seem particularly accurate or helpful right?? So no need to change anything right now. However, we will see a nephrologist at our next clinic appointment, and will have to repeat the GFR next year instead of every two years. I’m ok with that for now, I’m not running out to buy low-sodium bread yet.

So all of that leads me to this…we need to continue raising money for pediatric transplant research. If we could make transplant a cure, Addison and other kids and adults like her would not have to go through these invasive tests. THIS IS WHY WE RIDE!!

The Tour de Tranplant bike ride is coming up in just over a week. I really hope you can join us on July 29 at the Lower Seymour Conservation Reserve in North Vancouver for a great event, fun for the whole family and the elite rider! And if you can’t ride, please support us with a donation. Half the net proceeds from the ride will go to the Addison Fund for Pediatric Transplant Research. Help us make transplant a cure!!

Love,
Elaine, Aaron, Addison and Charlie

 

 

 

 

 

3 thoughts on “Done with hospital stuff…for now! #lifeaftertransplant #transplantlife

  1. Addison is so strong! I’m so sorry she has to go through all these procedures, but what a relief she’s all clear! XO

  2. Addison is one tough cookie … hang in there Mamma … so happy to hear all is within the normal range even if the GFR was in the low normal range that day … as the Brits would say ” Keep Calm and Carry On ” … I know that is easier said than done … hugs ❤

  3. i’ve come to love and admire you wonderful daughter…seeing her lying in her bed and looking very scared just broke my heart!!! You two are amazingly strong and loving parents! So glad this testing is over for now!

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