The heart’s working great…but those kidneys…

The good news is Addison’s heart seem to be ticking along just beautifully, however, the news about her kidneys is not as rosy. Her little body took quite the hit while she was clinging to life in the ICU and that seems to have damaged her kidneys. According to our cardiologist at Wednesday’s transplant clinic, after consulting with the nephrologists, it is likely Addison has chronic kidney disease. Wow. That is definitely not something you want to hear. Anything with the words “chronic” and “disease” together is rather dire.

After her GFR test a few weeks ago, we knew Addison’s kidney function was less than stellar, but to hear it called something that sounds as insidious as “chronic kidney disease” or CKD, just makes it worse. If we can tweak the hard-hitting immunosuppressant drugs, we may be able to stop the downward progression. We have now lowered her dose of Tacrolimus a second time in the past month and everyone is hopeful this stabilizes the kidneys and possibly even allows them to recover a bit. The key is not to let it get any worse. As her doc said, “If she maintains this level of kidney function throughout her childhood, that’s totally fine.”

It’s a tough hit of reality and a stark reminder that transplant is not a cure. We know we are buying time for our sweet baby girl by trading in her bad heart for a beautiful new heart, but it comes with a price. It’s one of those things I really don’t think about too often – after all who has time to wallow when you’re chasing after a toddler? But it’s times like these that make it tough to maintain a “glass is half full” attitude 24/7. Meeting Simon Keith this past weekend was inspiring, but also another sobering kick. If he is one of the world’s longest-living heart transplant recipients at 26 years, what does that mean for Addison?

I know…I’m just filling my brain with crap. I’m sure if Addison would talk she’d say something like, “Mommy, you think too much when there is way too much fun stuff to do. Like downward dog.”

Time to get on with living the amazing life we have and appreciating all those moments big and small.

Love,

Elaine, Aaron and Addison

6 thoughts on “The heart’s working great…but those kidneys…

  1. We will certainly be praying for Addison and her Kidneys to recover. She’s made it this far so we believe the Lord has big plans for this little fighter. She’s beautiful and I hope one day to meet her, but until then the prayers will be constant for her and her mom and dad. God bless you all!!!

  2. Elaine – you’re allowed to fill your head with all that “crap” , sometimes it’s just too overwhelming when you think things are going so well and you get hit with another problem (Morgan’s was a heart condition that, thankfully, after a relatively short procedure at St. Pauls, seems to have gone away – cross our fingers). The trick (and it is one) is too not allow the “crap” and uncertainty to completely overtake your lives — and it seems that you two certainly don’t let it. Addison is blessed to have two such wonderful, caring and attentive parents!

  3. Wow, e….yet another thing to absorb and “deal with”!!! Man!!!!! Of course you cannot help think of all the ‘what if’s’ and all that… But we all know that Addison is a fighter! She is strong, healthy and growing so quickly!!! I’m praying for her and her little kidneys!!!!! Thinking about you guys…… Love you!!

  4. Addison is growing up so fast! It’s so wonderful to see all these great updates! It’s a mothers instinct to worry but some things i live by is not to stress and worry over things you cannot control, live for today because there is no promise of tomorrow, stay positive, and never lose hope! Enjoy Addison! Love you guys!

  5. ((((Hugs))) Elaine….my husband and I used to say that having a child with complex extra support needs….felt like this….when times were ‘good’ we likened it to riding a boogey board on gentle waves…but always watching for the tsunami that might just blind side you when you didn’t expect it…just take a deep breath…go to your ‘ Zen happy place’ in your mind and do what you must do to get Princess Addie as well as you can…my heart goes out to you and Aaron…we never know how strong and tenacious we are until faced with these challenges…and speaking of Princess Addie…she is just too cute for words ….to quote Dr. Seuss ” oh the places you’ll go ” Addie…with that curiosity and determined tenacity of yours…the expressions on her face say so much 😉

  6. Oh Elaine and Aaron, I am so sad to read this news. At least there is a bit of hope that it will stabilize and not get worse. Mattias’ kidneys too have damage from dialysis and post surgery problems, and so does his lungs – also chronicle. It is so hard sometimes, especially when you hear the word chronicle. But as time passes, somehow we learn to live with yet another thing on the list. I guess we don’t have a choice really. I keep Addison in my prayers. Tomorrow Mattias is having another procedure. I hope your weekend will be good.

    Love, Hege

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