#kidneybaby part 4

As promised, here is your #kidneybaby update- the details of Brennan’s 8th surgery.

So last May, Brennan’s 4th surgery was on his bladder—the surgeon made a small opening in the middle called a vesicostomy that would allow the muscle (yes, it’s a muscle) to stop spazzing, and relax. But about six weeks later after some faulty ultrasounds and infection, Brennan’s right kidney/ureter had to be disconnected to another ureterostomy. So the vesicostomy (middle hole) was not being used for anything, but the care team decided it wasn’t worth putting him through another surgery right on the heels of 7 pretty major ones.

We carried on with our lives and took care of the holes as best we could. We have been extremely lucky thus far to not have to deal with any more UTI’s or extended hospital stays. However, something that Liam and I did not account for is Brennan’s growing curiosity and mobility and how those two things would affect his surgery site (in hindsight this was extremely silly of us). When Brennan began crawling around 10 months, we noticed his site getting slightly more irritated due to the constant movement of the diaper. Then, he realized he had three holes to play with in the bathtub and more recently, due to the beginning of those awesome toddler meltdowns, the site would get irritated when he would tense his abdomen and cry (or scream). Since the vesicostomy was not being drained by urine like the ureterostomies, it would get goopy and pooch out even more. Due to its growing size, sometimes this would result in him accidentally scratching the site. Then it would bleed, bleed, bleed (blood does easily wash off of cloth diapers, if you’re wondering!) and we would scurry to put on Neosporin or Aquafor.

When we had our routine visit with the urologist, he appeared concerned about the size of the vesicostomy. He knew it wasn’t doing anything, and would just be more of an infection risk in the long run so he said he would put us on the schedule to close it up while also doing a cystoscopy of his bladder to see if the muscle was healing. This came as a shock because we were told this surgery wasn’t an option until next year!

So on Thursday, the 27th, we were back at the Children’s hospital for Brennan’s procedure. It was definitely more difficult this year to see him go back because he was much more aware of his surroundings and the fact that mom and dad wouldn’t let him eat for 10 hours! When we were called back to PACU, instead of finding a nurse cuddling with our newborn, we saw a confused and in-pain toddler looking frantically for us. We did our best to console him and found that after just three short hours, his baby-epidural (called a coddle) had worn off and he was already walking around in his hospital crib. Of course, we paid for his daring nature that night when the pain really hit him and he slept for a grand total of two hours.

On the bright side, the surgery itself was not only a success, but the surgeon saw the progress he wanted to see and said that in about six months we can begin testing the bladder for functionality. The hope is that in a year, we will be able to reconnect the ureters to the bladder and marvel in a properly functioning urinary system. Make no mistake, this does not mean in a year he’ll be “fixed” or “cured”. We are still hovering at 50% kidney function and have been told that sadly that is the best we will even see until he gets a transplant. And that is a when, folks, not if.

We have also been coached on the fact that kidney disease itself is actually not what kills people—it is the secondary problems that result from kidney failure. These problems include, but are not limited to: diabetes, hypertension, calcification of the arteries in the heart, lack of growth hormones, etc. So we are working very closely with an additional team of nephrologists and nutritionists to address these problems as they appear. Right now, Brennan is currently being treated for anemia, acid in his blood, weak bone density, and general vitamin deficiency. I do not write this for pity, but simply for clarification because the next time someone says “oh your kid looks healthy, so he is (or will be) fine right?” might get pummeled by this preggo.

Now, I can hopefully say that I will be laying off the #kidneybaby posts until next year! But given our little goober, I won’t promise it.

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