Aaron and I took Blake to Iowa City last Thursday for his monthly appointment with nephrology. We also had an ultrasound and a urodynamics test with urology. The urology thing was a big deal because we got to learn exactly what might be the plan for Blake's bladder problems around transplant time.
The good news:
Dr. Jetton (our kidney doc) along with the rest of the nephrology team are super-duper happy with how he is doing! Awesome news! He grew a lot the past month and just really has been thriving. We tweaked a few meds, but otherwise everything was great.
The test results:
Dr. Kieran (our urologist we've had since the NICU) talked about Blake's test results. We learned through one test that his bladder holds less than one ounce, when it should be holding about three. Because of his posterior urethral valves that he developed in utero, his bladder is a freakin' disaster. It's a big hard muscle that just won't hold a lot of urine.
The reality check:
Dr. Kieran said Blake will more than likely have to have a bladder augmentation. That means they will shorten his ureters and use them to make his bladder bigger. In doing so, his bladder muscle will be shot, which means he's not going to be able to pee on his own. Ever. Ever-ever. He is going to have to have a catheter for the rest of his life. Not with a bag hanging to his leg, but a valve-type thing.
The bad news:
In doing the augmentation they are probably going to have to cut through his peritoneum, which is what he uses for dialysis, which means hemo dialysis. That means a new port and trips to Iowa City a few times a week. :(
How we feel:
Even though it sucked to hear, we kind of were expecting the news about the bladder. Sometimes we get so wrapped up in Blake's kidney stuff, we forget about his bladder issues. Nevertheless, we were still optimistic that we would get better news.
Here's the thing though...Blake is here. He's with us when he wasn't supposed to be. He's growing. He's thriving. He's happy. He's a little superstar. He continually amazes us. We'll adjust to this catheter idea. It's going to be alright. It's just going to be part of who Blake is. And we love that little bugger no matter what! :)