Stress & Worry in Southeast Michigan

So, today was clinic. Don't panic- apparently all's quiet on the kidney front. But, Daddy asked the Nephrologist for a referal for a 2nd opinion before we do the Mitrofanoff catheter in April. Neprho said that he'll schedual a meeting with him, the Urologist and our family so that we can feel comfortable before we move forward. He also said that he didn't think that the Mitro would interfere with Little Pom's dialysis. I am terrified. This is a HUGE decision and LP has to be ready to catheterize himself consistantly every two hours or else there could be complications. LP is not a fan of doing ANYTHING every two hours. So, basically, I'm dealing with:

- Fear of permanantly altering my childs anatomy.
- Fear that once we do, we/he won't be able to be as rigorous as we need to be.
- Fear that once we do, LP will still end up on hemo somehow.
- Fear of the unknown.
- Fear...in general, you know?

But the simple fact is: no mitro, no transplant.

I feel backed into a corner, undereducated, underprepared, unsupported. And I don't know what to do about any of these feelings. My research has turned up very little. Our urology team doesn't have time for us and tends to be rather brusque with us when they do. And there is no "kids with caths" support group, or play group, or e-list or anything.

I think I would feel sooooo much better if only we could meet another family with a kid LP's age who has a mitro and is thriving.

I think I'd feel better if I knew that this wouldn't have to be a forever kinda thing.

In the meantime, we have to buy two of these for Little Pom:
http://www.epill.com/pediatric.html

10-Second Pity Party Coming Up:

It's HARD being a parent!