Kidney Reflux Update

I don't think I've updated about Will's kidney reflux since my initial post explaining his diagnosis.

Since that post, Will has been on daily prophylactic antibiotics (he's on the third "best" option because the first two either aren't compatible with his bone marrow failure or made him extremely sick) to hopefully keep additional UTIs away.  Almost two weeks ago (November 1) he had a DMSA scan and follow up appointment with his Urologist.

Thankfully, his DMSA came back showing normal sized kidneys that are both function at 100%! This is a HUGE answer to prayer as we were all worried about Will going into transplant, and receiving chemo, with compromised kidney function. Will was an absolute angel during our day at Texas Children's and for the first time ever, we had a positive experience with the Nuclear Medicine department. Maybe all of the complaining constructive criticism Natalie and I have given has actually brought about change. Now if we could just see a change in cardiac imaging.

We met with Will's urologist immediately following the scan. I wish all test results were back that quickly! After hearing the good news about Will's kidney function, his urologist started talking about our plan for Will and his reflux.

Unfortunately that plan includes kidney surgery.

All of Will's doctors (hematologist, urologist, transplant doctor, pediatrician) feel that his reflux needs to be corrected before transplant. Their thought is that it is just too risky to have him become immune compromised with a {known} condition that increases the risk of infection. Post transplant infection (any type) is deadly. A simple/ treatable infection can, and does, quickly turn into a life threatening issue in patients that have zero immune system.

Alex and I are in complete agreement with this plan.

As of now, the plan is to operate about a month before transplant. Our transplant plans are to start chemo right at Will's first birthday. If we can make it to one year before heading to transplant (this is very much up in the air as Will's counts are dropping rapidly which could bump his transplant up) Will will be a candidate for a much less invasive kidney surgery. Obviously, this is what we are hoping and praying for.

Unfortunately, this minimally invasive surgery is not approved for children under 11ish months. So, if his transplant is earlier than expected, he will require a very invasive (think incision similar to a csection and a 3-5 day hospital stay) kidney surgery to correct the issue.  Also, if at any point his body shows signs of needing his kidneys/ ureters repaired prior to one month pre transplant, we will proceed with operating. So a break-through UTI will mean immediate surgery.

All this to say we are thankful for normal kidney function and praying he can make it to 11ish months before his surgery so we can avoid a major kidney surgery and correct this issue with a simply, minimally invasive procedure!