April 26th Appnt

Cole saw the nephrologist on Thursday.  We saw Dr. Steinke herself.  She had concerns regarding the repeat infections, and had been in contact with Dr. Steinhardt, who still feels he would like to wait it out barring a substantial number of future infections before he goes ahead with surgery to correct the reflux; he wants to try and get him as close to one year of age as he can.  She felt something may need to be done sooner to protect the kidney function he does have.  We weren't really able to establish a specific parameter as far as how many infections he could have before she felt there was no option but to correct it sooner. We may be going to see another peds urologist out of U of M for a second opinion.  She did explain to us that even with the surgery, the reflux would still be present, improved at best, and that resolving on its own as some kids do is not an option for him due to the severity, though it may come down from grade V to say a grade IV.  She showed us the images from the VCUG again.  I realized then that what I'd originally thought was his ureter the last time we saw the films was in fact the part of the catheter that was curled up on his belly under his papoose; his actual ureter when she pointed it out was severely dilated- I thought it was bowel in the back round before, that's what it looks like.  It was a little shocking.  We had no idea how dilated they were.  So, our discharge sheet now boasts Congenital Hydroureter on its list of diagnosis.  We could have gone the rest of the day not knowing that.  She pointed out that unlike a very straight forward reflux, with the amount of dilation his ureters have, the urine not only travels up to the kidneys, it basically sits in a cesspool and slowly washes around.  No wonder he's soooo prone to infection.  She told us how much more complicated the surgery becomes then, as Steinhardt will have to taper the ureters also, stitching them down the sides as well as the reimplantation.  Nerve wracking decision, especially as it would be four different surgeries between correcting reflux and both obstructions, doing one side at a time.  We also learned that Cole is missing some of his ab muscles, having not been able to develop all of them due to the dilation of his kidneys and ureters.  She predicted he'd still meet his milestones with mobility, that he'd just work the muscles he does have harder.  She estimated his kidneys function at about 50%.  We also saw the last three renal ultrasounds, which don't appear to have gotten worse.  They are definitely echogenic (see all these fancy terms I've learned?), and you can see the healthy tissue all along the outside, thinned, but there, and then the entire middle of the kidney, which should have grey matter throughout, is solid black, just full of urine.  Looks hollow.  There was a resident in the room, following her, and you could see her eyes get wide before she put on her game face.  Then she stood there silent.  Happened to us a few times now.   I think that's when you realize how bad it is.  I talked to her a bit about feeling so guilty, about it being genetic.  I won't delve into that but she is such a compassionate Dr.  I asked her if she had a specific charity that contributes to research they utilize, or to kids they treat, as Mike and I would like to start a small sort of fundraiser in Cole's name to contribute to a larger one, something positive.  She suggested the NKF or Make a Wish.  Then she went on to say that all of her transplant kids will go on a Make a Wish trip, that Cole would.  I freaked a little, saying "I thought that was for terminal things", to which she said, no, "its for life threatening illnesses".  That was so hard.  Makes it very real.  Our son has a "life-threatening illness", or will have.  So, with that thought we headed back over to the lab, and awaited the results which we received by phone yesterday.  His BUN was down, 9; Creatinine .46, which is even lower than the .5 it had plateaued at, Iron stores a little low so switched to a vitamin with Iron, and increased his Bicitra to cover his weight gain.  And FINALLY, a blood type.  I held my breath and prayed- and he's B+...so am I!!  Think I cried a good half hour over that, I'm so grateful and relieved.  God is good!  Doesn't guarantee I'm a match but its such a comfort to know I'm not ruled out.  So that was all wonderful news, and despite the upset of Thursday, the most important thing is he's growing and thriving and his labs look good right now!

Thank you Tina, Rocky, and Elisha for watching the rest of the troops!  I know they had a blast!