The transition to the mitrofanoff channel has been relatively easy and has allowed his bladder to function as closely to normal as it ever has thanks to the months of rest his bladder got with the spc. The option of cathing now only at night into a free draining bag allows him to be dry and his bladder to continue to be on full rest for 10ish hours every day which will continue to be important for his kidney and bladder health down the road. 

He’s very active and happy and has yet to have a uti. The general thought with a catheterizable channel is that uti’s are going to happen. The method is called CIC (clean intermittent catheterization.) It’s clean but not sterile. Patrick and I are definitely process people so we nailed down our clean process early and apparently it’s doing well so far. One conversation we had early on was whether or not to let Paul be in lake water since it presents the possibility of a whole lot of bacteria to his mitro opening.  The veteran clinic nurse said it wasn't a good idea and the surgeon said basically - let’s see what happens. 

We’ve spent the better part of the last five years encouraging our kids to get out in nature so to suddenly take away being in non chlorinated water forever was something that I had been dreading. On the other hand I didn’t want to end up with him back in pain from spasms, having to fight some nasty infection or (the bad outcome) damage to his kidneys. 

We did the lake water so many times this summer with immediate cleaning after we got out. It worked for this summer and it’s all I could have asked for. We skied, we threw rocks, we splashed, we paddle boarded, we kayaked and chased and fetched our dog as much as we wanted and for this summer we dodged any infections. We needed a break and we got it. 

This fall Paul’s getting to go to school for the first time in his entire life without many if any special accommodations in terms of bathroom routines. I’m so excited for him. No one wants to talk about their bathroom plan with their parents and teachers daily/weekly when you’re in Kindergarten, 1st, 2nd or 3rd grades. Finally in fourth grade he will get to just be a regular kid going to school. His bladder is finally healed enough that it signals him when he needs to go and has recovered enough capacity to not leak constantly. It brings Patrick and I an uncommon amount of joy every time he goes to the bathroom spontaneously because he feels the need. 

What’s next? He gets to go to school, he gets to be strong and fun. Hopefully he keeps on growing in empathy when he sees other people go through their hard thing. He has a sensitivity to people who are going through things that he thinks might be painful because he knows how hard that can be.

He still has kidney disease. Which continues to be a bummer when you think about it for too long.  He had a dip in creatinine in June that was initially thought to be kidney recovery but wasn’t. He’s back to his regular 1.3 creatinine. It was artificially low due to him not eating during his bowel obstruction and not doing any activity when the test was taken. When he was an itty bitty baby a kidney transplant in his late teens/early twenties seemed a lot farther off than it does now. It doesn’t seem to effect him too much yet but I’m comforted to know that the work he did on himself this past year emotionally can continue to grow as he approaches future hard things.