For part one- please read Kidney Issues.
My son was scheduled for his procedure today which the surgeon hoped to get a better view of what was going on with the ureters and drainage problems.
We arrived first thing and went through the pre-op steps. I went with my son into the OR room and chatted away as he tried “to blow up the balloon with the mask” (code for the anesthesia induction). We expected the procedure to take 60-80 minutes. The plan was to insert the catheter, then go in with a scope to visualize the interior, (bladder, ureters) then inject dye in the ureters to see what they could; with the possibility of putting in 1-2 stents to try to open and drain the ureters.
The procedure ended sooner than I expected. (It could be because I passed the time chatting with my high school English teacher who was in the waiting area as well!)
Our surgeon was somber when we spoke. Jacob’s right ureter was so closed up at the bladder that he could not even inject the dye to see it. His bladder was shockingly distended- like a deflated balloon- and adult sized! He suspects that Jacob never fully recovered bladder function from the initial bladder failure when he was 1; and that since then the retention and failure to contract has worsened the organ. He thinks we will need further surgeries, reimplantations quite possibly, the prospect of a suprapubic catheter drain; and the confirmation that I will most likely need to start catheterizing my son again. There is still the possibility of a nephrectomy (removal) of the right kidney as well. If we are facing any of this, there will likely be stints of time with a catheter post any surgery- and it would mean Jacob would be home recuperating- not attending school (which also impacts my ability to work my ‘outside the home’ job).
I am still reeling from all this. I have wept. I am angry. I am sad. I am short of breath and devastated. I am mourning for my son; for his health. This is not exactly life- threatening I realize, but it greatly impacts his future, his quality of life, what he can do. The burden of his care is made heavier by these added complexities and needs. What kind of adult life will he have with all these issues? I am so sad thinking about it.
We will be having another procedure in the next few weeks for a “urodynamic study” to evaluate the bladder functioning. We may likely be heading down to Boston’s Children’s Hospital again for a second opinion/consultation. Then we will gauge the next step.
He is now busy coloring and playing and no worse for wear. He is lucky that he does not have the burden of foresight to comprehend the rough road ahead of us. (and yes, I WILL pull it together –after I finish grieving- and trudge on- because there is no other option.)