grade 5 reflux with a neurogenic bladder

[Anxiousmom97]

my son (now 8 months old) was diagnosed with a grade 5 reflux along with a neurogenic bladder post his mcu and cystoscopy which were performed when he was almost a month old, after a life threatening episode of sepsis. The reflux situation caused urine to build up in the kidneys, so much so that one of his kidneys has been permanently damaged. The doctors performed a ureterostomy to preserve the function of the remaining kidney and drain the refluxing urine. We currently put dressings around his stoma and keep him in a double diaper. As he is growing, I get concerned about what his future will be like. Will this ureterostomy ever be reversed? Can the bladder function ever improve? Will his incontnence issue become better or go worse with time? How to cope up with dialysis or transplant situations? I get severe mental trauma thinking of all this. He is my first born and I had never imagined that life would take this turn.

[MatrixMatriarch]

Hi mom

I’m so sorry that you are feeling so much anguish. Your feelings are valid. I can relate to having my first born have medical problems. You are not alone. And children are resilient. I’m so glad that the medical team was able to preserve kidney function with surgery. From my understanding this surgery can be reversed. I don’t know what the timeline will look like or what the prognosis for your precious baby will be. Just focus on loving your baby and loving yourself. It’s ok to grieve. But you are stronger than you think. Do you have a nephrologist and a urologist that you follow with? For our son the first year of life was the most unnerving as far as how things would develop. After that it has been calmer and steadier with more understanding. Building strength as a family unit will be the most sustaining in times of uncertainty. Please keep in touch. I am here.

[Anxiousmom97 in reply to MatrixMatriarch]

We do have follow ups with a pediatric nephrologist and urologist after every three months. But as it is, they always say that there’s uncertainty as to whether his bladder and kidney function would get better with time. And as you said, the first year is actually really tough where we are learning to cope as parents. I’m so sorry that you also underwent turmoil during your journey as a mother. Hope things get better at your end as well. As much as I feel grateful that I found support inyou, it’s equally disturbing as to how parents can go through so much for their precious ones. Hoping to stay in touch. Lots of love.