"Ax had his monthly clinic visit today, and they surprisingly had the results of the genetic testing (we didn't expect to hear anything about that for another 6 weeks or so). While it's *incredibly* confusing, here's what we got out of it: the type of FSGS he has, which they still don't know much about, doesn't appear to be the type that will automatically come back in a transplant kidney. This variant gene is called NPHS2. This type means he is steroid resistant so any drugs he may have taken before his kidneys failed would not have helped and would have transitioned into ESRD no matter what. It is reassuring to know that we could not have prevented this and no longer have to blame ourselves thinking if we caught it sooner we could have stopped his kidneys from failing. The onset of this type usually occurs between 3 months and 5 years and progresses to end stage kidney disease rapidly.
In the comments section of our six page test results, it says: "Most significant result: This test detected a DNA sequence variant of unknown clinical significance. but the following data indicate that this variant may be more likely benign than pathogenic." Which means there's a probably a "smaller chance" it will come back in a new kidney. That's the best possible new we could've heard! Really, that's the absolute best news we've gotten since all this started. There's always a chance it could come back and attack the new kidney, but we'll take the odds we have on this one.
Otherwise, everything looks good. His magnesium was quite high so we've had to make some adjustments to his meds, but that's about it. For a moment, we feared being admitted again. It was back in April when we were last admitted for his high Magnesium.
As far as everything else is concerned, his blood pressures have been great as of late (and very stable), his weight is coming up, and he's tolerating feeds better than ever before. Those are all very important right now, because we started growth hormone earlier this week, so he'll start getting taller. And we'll need his weight to come up with this height.
We still have a ways to go, but we're one step closer to transplant! We're all happy about that! Prayers and thoughts today were much appreciated! Thank you all so much!"
I created this fundraiser in hopes of raising money for medical and living expenses for my two-year old nephew Axten and his parents. On December 26, 2014 their lives changed. Ax had been sick for a few days and just not getting better at all. My sister noticed his face, legs, and arms were really swollen so they took Axten to the emergency room. The doctors there immediately sent them to Dallas Children's Hospital where they found out that Axten's kindeys were not functioning. He has been diagnosed with Chronic Nephrotic Syndrome and FSGS, which means he will be on dialysis until he is big enough for a kidney transplant. They have insurance, but it will only cover a portion of what his medical bills will be. Kori, Ax's mommy, quit her job to take care of Ax and devote every bit of strength and extra time towards him, putting even more financial strain on them. Costs will add up, and I figure if we can all donate even a little, this will help to ease the burden of stress Cam, Ax's daddy, and Kori have to deal with. I know our friends and family care, and if you are able to donate any amount at all, it is greatly appreciated!
To keep up with Ax's status and updates from his parents, like this page on Facebook: https://www.facebook.com/teamtinytank
Here's Ax's full story, as told by his daddy:
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 mid-December 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 when 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 spent the following two weeks in the hospital.
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 start cleaning his blood. He handled it all like a champ, especially considering his small size. I nicknamed him Tiny Tank, because honestly, he's just tough as nails.
We've never experienced anything so terrifying in our lives. Weeks later, we're still trying to adjust to what's happening and the new life we'll have moving forward. He's responding very well to dialysis, which is a good start. Still, we have a long, hard road ahead that neither of us could have ever expected.
We've already received an unbelievable amount of support from friends, family, and even complete strangers. It's a tough road, but we're proud to be on it with our baby boy and all of his supporters.
