May 11 update

For 2 hours now, our baby girl’s new heart has been beating entirely on its own! She was taken off the ECMO heart lung machine this afternoon…what a relief to jump over that hurdle. Her ICU room now looks quite empty without all the huge pieces of equipment. Now it’s a waiting game…again…as doctors keep a very close eye on her vital stats to make sure her new heart keeps working properly.

While we all had a cheer when Dr. Gandhi came in to tell us Addison was off ECMO, nothing happens here in a smooth line. Earlier in the day, Addison’s hands were twitching a bit and there was concern she was having seizures. Neurology was called in to consult and they hooked her up to an ECG to read brain activity. Turns out the hand movements were not seizures, but in the 25 minutes they were monitoring her, they did see 20 seconds of seizure activity. So Addison has been hooked up to the ECG again for a longer study of her brain activity. It could be an isolated incident, which is of course what we are hoping for. The roller coaster ride continues!

There is still much to be thankful for, and when we stop to absorb all that has happened since last Monday, it is still astounding to think about the things that have gone Addison’s way…
– we listened to our ‘first-time parent’ paranoia and took her to the hospital
– she got on ECMO before her heart actually failed completely, therefore preventing damage to other organs
– Dr. Gandhi just started at Children’s Hospital 10 months ago and prior to that was one of the top paediatric cardiovascular surgeons in the US, performing dozens of heart transplants and pioneering the Berlin Heart program at his previous hospital. Before now, there have only been 2 paediatric heart transplants in BC, and no Berlin Hearts. All other patients have had to fly to Edmonton or Toronto for treatment, waiting for months for a donor heart far away from home
– Addison was listed for heart transplant Thursday afternoon, the only ‘status 4’ baby in Canada which put her at the top of the list. By the time we got news about the available heart, two other status 4 babies were listed in Canada, but Addison was at the top because she was listed first.
– a heart became available 36 hours after she was listed

We are keeping up the positive energy, though it does get difficult at times when we are so physically and emotionally exhausted. We are trying to sleep and eat as well as we can (made a lot easier thanks to family and friends who have been bringing a constant stream of food to the hospital) because we know there is still a lot ahead of us. Thank you for helping us keep the faith and hope alive!! We still can’t believe how many people out there have reached out to us…the circle of love just keeps growing.

Love
Elaine, Aaron and Addison

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