I am notorious for sleeping in as long as I possibly can to eke out every last minute of snooze time. When you have a reporter work day that goes from 10am to 6pm, it’s quite luxurious and early mornings constitute anything before 8am. With a newborn baby, those better-than-bankers’ hours are pretty much out the window, and with Addison’s extra medical needs, my mornings now start at around 6am. Most days, I can get another hour or so of sleep after the 6am feeding before Addison’s 8am meds. Except on Wednesdays. Aaron and I bundle Addison up to head back to Children’s Hospital for Solid Organ Transplant Clinic.
The clinic is where all the transplant kids have their routine check-ups. The further out you are from your transplant, the less often you have to go. Some kids only go once or twice a year. Other newbies, like Addison, are there every week at the beginning.
A typical Wednesday for us starts at about 6am. We wake up the princess if she isn’t awake already and feed her, change her, pack up her diaper bag with diapers and all the medications she will need through the morning. In between all that, Aaron and I take turns showering, shoving down a piece of toast, and packing up the car. We need to get to the hospital before Addison’s 8am Tacrolimus dose because the blood test for Tac levels has to be done before that morning dose. We haven’t been hugely successful getting there before 7:59am but we are working on it. Addison has become quite the pro at getting her blood taken. She seems to hate the rubber tourniquet more than the actual needle part. Today, the lab tech drew blood with a heel poke. As soon as that vampire torture is done, we give her the Tacrolimus.
Then we whisk her downstairs to the Children’s Heart Centre for her two EEGs – echocardiogram and electrocradiogram. That takes about 45 minutes. Now it’s around 9:30am or so. Time to head over to the Ambulatory Care Building for the Transplant Clinic on the 2nd floor.
At the clinic, patients are put in individual exam rooms and all the experts come to them. Addison sees a cardiologist, the transplant nurses, transplant social worker, transplant dietitian, and the transplant pharmacist. She is weighed and measured, sometimes more than once. She is poked and prodded a bit for blood pressure, lung and heart sounds. Her medications may be tweaked. Depending on how many other kids are at clinic, this can take anywhere from 2 to 3 hours.
On top of the usual Wednesday routine, Addison may also have visits with her pediatrician, an X-ray, or other little things. Last week, she had a last remaining stitch in her leg where one of her lines had been placed removed. Today, we had to stop by the pharmacy for a top-up on one of her meds.
Today we also got a chance to see Grace, Addison’s transplant buddy. And we met two other families who are 10+ years out from their heart transplants! One family had to travel to Loma Linda in California. The other baby had to go to Toronto. It was really inspiring to talk to them and hear/see how well those kids are doing today.
Phew…now it’s time for a nap!
Elaine, Aaron and Addison