Little Pom Progress Report

Well, we've had a busy couple of days! On Thursday, Little Pom had urology clinic. This is also known as our quarterly 15 minutes with the urologist. We got some news that last fall would've made me very happy- they want to move forward with his Mitrofanoff. Three months of bladder training using the supra-pubic and there's been no progress, so, we move onward. Honestly, I was really shocked at how hard this hit me. After all, in November I'd been angry that they were making us wait before we did it. I felt as if they were unnecessarily delaying LP's progress towards transplant eligibilty. Now, after three months of hoping that maybe this whole procedure could be avoided, it was back...and I was shocked. I guess I hadn't realized just how hopeful I'd been until they yanked the rug out from under me.

To be fair, this is a good thing (I guess). After all, by mitigating Hinmans Syndrome, we move forward towards a kidney transplant. But, as I've discussed before, the Mitrofanoff is a really *big* surgery. Not in terms of the actual surgery- the urologist wants to do it using the super-duper-bestest-most-technologically-advanced lathroscopic robot available. Which is pretty cool. But still....we're re-arranging organs here! We're doing something that will result in my baby peeing through his belly button for the rest of his life. This is B.I.G. big. We do not enter into this lightly. This is one of those times when the full weight of parenthood settles on your shoulders and you wish there was someone bigger, more qualified, more competent than you are to make the hard decisions for you. But there's not.

One of our biggest concerns is the fact that once they do the Mitro, there's a chance it could interfere with Little Pom's PD (peritoneal dialysis) and he could end up on hemodialysis. This is bad. Not only is it harder on his body (involving multiple needle pokes and faster, less frequent cleaning) but it would pull him out of school for 4 hours, 3 days a week. I'd basically have to quit my job and manage his care full time. He would have to receive homebound services...something I've been trying to get for him (to no avail) for months now. Everything would be harder, scarier and more trying than they already are. I don't want that. And, if for some reason Daddy doesn't work out as a donor, this would become the status quo for months, if not years.

So, we're going to ask if it's possible to put off getting the Mitro until we've got a confirmed tissue match. He's doing well on the PD and we don't feel a need to rush into anything. It's just a matter of whether or not the transplant coordinator and his care team (Nephrology and Urology) will let us delay it. It's quite possible that the transplant people won't more forward until he has the Mitro in place. In which case, it becomes a crap shoot- get the mitro and hope to goodness that it doesn't interefere with the PD.

Needless to say, this has been a tiny bit stressful for us. We ended up needing to go to the super-duper-ultra-cool-robot hospital for pre-surgical stuff on Friday. That was good, because it meant that I had to take a day off of work and frankly, I was such a scared, stressed zombie (such a pretty picture, huh?) that I would've been useless anyway. Ugh.

So, comment time: what would YOU do if you were in our situation? I really need some feedback. I've found some e-lists and support groups for parents of kids with kidney disease, but I'm just so overwhelmed.

In order to encourage your feedback, I will pre-reward you with pics of Little Pom:

Here he is after taking 3rd place in his first ever Cub Scouts Pinewood Derby:



And here he is showing that even after a 0-16 season, he'll always been the Lions #1 fan: