Hi Everybody. Yesterday we spent most of the afternoon up at OHSU, meeting with doctors about Madeline's kidney problems. Maddie's doctor, Dr. Steven Skoog, is the chief of pediatric urology up there, so I know we're in great hands. Most of the information was what we expected to hear, so that was reassuring.
Maddie's left kidney is significantly smaller than it should be, but he said we'd never really know if that was due to a malformation in the womb or due to scarring from infections over time. We'd been told previously that her right kidney was enlarged (trying to overcompensate), but Dr. Skoog said he thought it looked fairly normal. The previous procedures Maddie's had done focused on the physical form and structure of the kidneys/bladder but it didn't tell us much about how they're actually functioning. So our next step is to schedule a test to determine the input/output from the kidneys and what percentage each kidney is functioning at. Even if the small kidney isn't functioning that well, Dr. Skoog didn't seem to think it would be a long-term concern (since many people live on just one kidney anyway) as long as we fix the other problems. He did mention, though, that our next child will be at a higher risk for also having kidney reflux.
As far as treatment, we were given two options. One procedure is minimally invasive, where they'd inject sugar molecules near the ureter valve (which is not functioning properly and is allowing urine to reflux back up into the kidneys) to essentially create a dam, blocking urine from backing up. He said this is a day-treatment option with quick recovery (no incisions), but that it only has a 75-85% rate and that's on reflux that's Grade 2-3. Maddie's reflux is Grade 3 (moderate) on the side with the somewhat normal kidney and Grade 4-5 (severe) on the side with the small kidney. Of course, we could try this option first, but we'd have to wait 3 months afterwards to see if it worked and it's like a 50/50 chance since her reflux is more severe. I'm hesitant to put her through something that most likely wouldn't work.
The second option is surgery, which is what I was expecting him to recommend. The surgery is similar to a C-section: she'd be given an epidural to numb her lower body, but still be awake (hmmm...wonder how well that would go with a 2-year-old for a couple hours! Not sure if they'll allow us in the operating room with her or not). They'd make an incision across her abdomen, but not through the stomach muscles, then detach and re-attach the tubes between the bladder and each kidney so that everything would be flowing properly and there'd be no more reflux. Recovery time is 3 days in the hospital and then taking it easy at home for a few weeks--he said kids are good at naturally limiting their activity, based on what feels okay to them. Surgery is 98-99% effective.
Keith and I are going to talk it over with a few doctor friends of ours, but we're leaning towards going ahead with the surgery and just getting it over with. The first opening for surgery would be June 15th, so it's already a ways out.
One thing the doctor did mention is that when we start seriously potty training, Maddie will be at an increased risk for urinary tract infections (which is what likely caused all this in the first place) since she'll be learning to "hold it" for longer periods of time, giving the refluxed urine time to breed bacteria. That makes me a little nervous. He said we could still try potty training, but take it more at her own pace instead of the rush method (and I was JUST about to buy a book on 3-Day Potty Training that worked for Maddie's cousin!). Oh well--I'd rather she take a bit longer at potty training than get infections over and over. I just want my little girl to be healthy again! Please continue your prayers. We appreciat everybody's support!! :-)