Please pray or send positive vibes to Jack. We found a bit of blood in his diaper around his birthday. We freaked and took him in to the doctor immediately, of course. They took a urine sample and told us that he developed a urinary tract infection (UTI), so they put him on antibiotics. The pediatrician was worried that he had a blockage somewhere though, because he couldn’t get the catheter in on either attempt, so they scheduled a sonogram for last Friday.

On Monday they got the results, and the pediatrician called and said that Jack had hydronephrosis:

Hydronephrosis is dilation or stretching of the area of kidneys where urine collects that can occur when there is an obstruction of urine flow somewhere along the urinary tract, most often in the upper section [ read more about it here ].

He also mentioned that there might be some evidence that he has duplicate urethras, an extremely rare congenital malformation which is causing vesico-ureteral reflux (backwash of urine), [ good explanation of that here ] i.e. the blockage causing the hydronephrosis.

He told us that the sonogram wasn’t enough, that we definitely needed to go through with the VCUG (they insert a catheter, inject him with dye and take an x-ray to locate the potential blockage or other problem) so they can find out for sure what was going on.  They scheduled that with a pediatric urologist up at Children’s Mercy, but the soonest they could get him in was June 8th.  (Long story of me calling them two or three times trying to get his appointment moved up, but I’ll skip that.)

Fast forward to yesterday. I was playing with Jack during my lunch break, and I noticed he seemed a little pale and withdrawn. I touched his forehead, and immediately knew he had a fever. I took his temperature and it was 101. The pediatrician had warned us to watch for fevers because that might signify worsening of his infection, so I didn’t mess around at all, I immediately took him in.

They attempted to catheterize him again, and this time managed to get it on the second attempt. (I can only hope you have never been unlucky enough to watch your baby boy being catheterized. It was bad. I was in tears.) Within minutes they knew he either had a recurring or ongoing UTI. Doc told me that coupled with the fever, they were going to have to be careful and treat it very aggressively, because back pressure on kidneys could cause permanent damage if left unchecked.

He was spouting off medical terms (which I have since looked up, but didn’t know at the time!), which I’m sure was his attempt to reassure me, but my pediatrician has a very bad habit of giving me worst case scenarios without really telling me they’re worst case scenarios.  He’s kind of like an absent-minded professor who thinks out loud.

So after I heard “Reflux is the main reason why people lose their kidneys,” I kind of freaked and started pounding him with questions, but I didn’t really feel like I was getting anywhere. He was telling me we were going to wait for the cultures to come back and then put Jack on another antibiotic. Then we just needed to get the VCUG done to find out exactly what was going on. Okay, got it… but….

I said “So what happens if he DOES have two urethras?” He said “I can’t really speculate on that… you’ll have to discuss that with the urologist.”

Guess it’s a-okay to speculate about what might be wrong with him, but NOT okay to speculate about treatment? What the … ? INFURIATING! This has happened with him before. It’s so frustrating. Don’t use phrases like “permanent damage to his kidneys”, “can be very dangerous”, or talk about how people lose their kidneys and then clam up. What the hell is that all about? If you’re going to talk worst case scenarios, then go the freakin’ distance and tell me what happens with those worst case scenarios!

Also, since it’sTHAT serious, WHY are we waiting until June 8th to see the urologist and get the x-ray? GRRRRRRRRRRRRRRRRRRRRRRRRRRR!

Okay, so I’m furious. That much is obvious. But I’m also very nervous and scared. After reading up on all the above-mentioned issues, it seems pretty clear that one way or another, surgery is probably going to be required. It’s a different surgery for each type of issue, but they’re all S-U-R-G-E-R-Y. That scares me half to death. He is only 12 months old! After everything he went through when he was born… he doesn’t deserve this.

So my request to you is to pray or send good vibes that:

1.) This new antibiotic clears up his UTI, because it’s obvious it’s causing him great discomfort (he’s been on a steady dose of Tylenol and Motrin for pain, but it only does so much);

2.) That the urologist moves his appointment up as soon as they get the cultures back on Monday—there’s no way I’m sitting on this until June. I will find a different urologist or hospital if I have to; and,

3.) That whatever does have to happen—surgery or not—that it’s routine and everything will be okay.

I’ve been trying to tell myself all of those things for the past couple days. I’m sure everything WILL be fine. I’m just a worrier.