Yesterday, I posted that my family recently got hit with a life-changing event. I want to share a little bit more about that today.
To get to the point, my wife and I found out our two-year old has a chronic kidney disease called Chronic Nephrotic Syndrome. Basically, his kidneys aren't working as they should, and they are irreparable. In order to live, he's going to need a kidney transplant, but he can't even have that done until he effectively doubles in size. This is a difficult task in children with any chronic disease, but the kidneys are especially crucial in growth. It's going to be a long, hard road that will perhaps take two years or longer. In the meantime, he's going to require three weekly dialysis treatments.
For those of you who are interested in the longer version of the story, here it is. I'll try to keep it as simple as possible.
Axten has always been a small baby, much smaller than other children his age. We just assumed that this was because my wife and I aren't very big people - her being 5'4" and me only 5'6". He's also a very picky eater, but that's not uncommon for a two year old. We figured he'd grow out of it. A few months ago, we started noticing swelling around his eyes, mostly in the morning when he wakes up. A lot of kids have allergies, so we just chalked that one up to the dusty Texas atmosphere.
Turns out those were all the first signs of a serious kidney disease. It wasn't until last week when he came down with the flu that we knew something more was wrong, when his feet and legs started swelling. It was the day after Christmas and I decided to take him to the ER because of the swelling and lethargy. After one look the ER doctor told me to take him to the Children's Hospital in Dallas immediately. We've been here ever since.
We had no idea what we were in for. We were in the ER for six or seven hours while they ran all sorts of tests on him. He was severely dehydrated from fever, which sent his kidneys into overdrive. Apparently they were functioning just enough to get by before he became ill, and the sickness was just too much for them to handle. Within 24 hours of arriving at Children's, we went from thinking he had some sort of flu and infection to finding out he has failing kidneys, a surgery to install a hemodialysis catheter, and the first round of dialysis treatment to clean his blood. He has handled it all like a champ, especially since he's so small. I nicknamed him Tiny Tank, because honestly, he's just tough as nails.
I've never experienced anything so terrifying in my life. We're still trying to adjust to what's happening and the new life we'll have moving forward. He's already had four dialysis treatments, but has responded exceptionally well to them, which is a good start. After spending three days in the intensive care unit, we've been in a regular room for a couple of days. Eventually we'll get to go home, but we're still not sure when that will be.
We have a long, hard road ahead of us that I never could have expected. I'd like to ask that everyone keep us and Ax in your thoughts and prayers. This all happened so suddenly we're still trying to figure it out. Honestly, it's overwhelming. I still can't believe any of this is real.
If you'd like to help out financially, my sister-in-law started a GoFundMe account to raise money for his treatment. I don't want anyone to feel obligated by any means (and I'm honestly not sure how I feel about sharing this link in the first place), but I've had several requests for a way to donate since we first started telling people, so I'm sharing it here, too. The link is attached.
Thanks for reading. Just typing this up has been cathartic for me.