A day of tests, appointments, and medical experts

We have been feeling a bit lost with such a long stretch between hospital appointments, but it’s a good feeling and something I’m sure we’ll get used to very quickly. Before Addison’s biopsy in February, our last Multi Organ Transplant Clinic visit at BCCH was back in December prior to our Australia trip.

First time I'm big enough to play with the house in the waiting room!

First time I’m big enough to play with the house in the waiting room!

Regular blood tests have been looking really good, except for the kidney numbers. We have been watching that pretty closely since the Princess was diagnosed with chronic kidney disease last year from her time on ECMO. After adjusting one of her anti-rejection drugs, Tacrolimus, and giving a smaller dose every 8 hours instead of every 12 hours, the numbers had slowly dropped down to the high end of normal – fantastic news. However, in February, we again tweaked her Tac to go back to a dose every 12 hours and since then, the BUN and creatinine have been creeping up again. Sigh.

Transplant nurse Gee playing peek-a-boo

Transplant nurse Gee playing peek-a-boo

There are a couple of options. One would be to switch out her second anti-rejection drug, MMF, to a new one called Sirolimus. It can be easier on the kidneys but 30% of patients develop mouth ulcers and can’t stay on it. The other option is to go back to dosing the Tac every 8 hours, but that involves waking Addison up at midnight every night to give her meds. So after some discussion with her transplant team, we are going to try lowering the Tac and sticking to the 12 hours. We’ll get blood done before we leave for our rebooked trip to Hong Kong and Thailand in May, and then check right after we get back. We are also going back in for a glomerular filtration rate test (GFR) in early June to get a more accurate look at kidney function. Our previous one in August was what really set off the red flag for kidney disease. I am so hoping her GFR number has not dropped.

Not sure I like this!

Not sure I like this!

On the positive side, her heart function is excellent. We also had a hearing test this afternoon and all of that is completely normal. Yesterday Addison was assessed for speech and that is also great. Overall, she’s doing amazing right now – so healthy and full of energy. Such a zest for life…especially when it comes to climbing to the tallest part of the playground and sliding down the steepest slide! So we just keep taking it all day by day, smiling and giggling at the silly stuff whenever possible.



Elaine, Aaron and Addison

3 thoughts on “A day of tests, appointments, and medical experts

  1. I have a 21 month old heart transplant baby who is on sirolimus. It’s been great for her, so if your plan with Tac doesn’t work, don’t be scared to try sirolimus. Good luck!

  2. Little Addie sure does have a zest for life!!!!!!! Sending positive energy so her kidneys react well to the lowered Tac levels!!! HK in less than 3 weeks! We are very excited!!!

  3. Hey Heart Buddy!
    Glad to hear your heart & ears are working well. Hopefully your kidneys will respond positively to the change in meds. It’s a crazy balance act with meds – not too much, not too little, needs to be just right. Hmm… reminds us of the Goldilocks story. 🙂 We’re juggling our meds right now too.
    We’re looking forward to reading about your HK trip. Our family is living vicariously through you right now & counting down the months until we are able to travel again. Cheers!

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