Mason, like many children with Spina Bifida, has some bowel and bladder issues due to muscles being affected from the nerve damage of his SB. Standard protocol is to catheterize the child from birth to empty the bladder completely. It’s important to empty the bladder completely to avoid urine staying in the bladder and becoming infected, causing bladder and kidney damage.
When Mason was born the NICU started with cathing him every 3 hours around the clock. They would measure the amount they were getting and weigh his diapers as well, trying to see how much he was peeing on his own. A few days into our NICU stay they moved Mason to a 6 hour cath schedule because he does pee in his diaper some as well. That is the schedule we came home with. What it meant was that every day and night without fail we had to set an alarm to wake us so we could catheterize Mason. Do you know how awful it feels to wake a baby who is finally sleeping, especially in the middle of the night? I just want to let them sleep.
I also posted here about how we had some trouble cathing Mason at first. It’s a matter of coordinating the tube through several openings. When we came home Mason was not circumcised, so we had the opening in the foreskin first. Easy to get through but because it’s semi-loose skin it doesn’t stay lined up with the opening in the penis. You can very easily miss and never make it to the sphincter and bladder where the urine is. It was frustrating to say the least, though it got easier with practice. We finally got approval from all the doctors involved to have Mason circumcised and it’s made a big difference in how easy it is to cath him.
Well, at Mason’s first Myelo clinic we were sent home with a chart to fill in for 6 days of Mason’s caths. We were to cath into a tube with measurements marked on the side, write down how much we got out and what time it was, and if his diaper had been wet or not. That’s all the explanation they gave us so we had no idea what amounts they were looking for, we just knew they wanted to make sure we were cathing often enough for Mason’s body.
We turned in the record and a few days ago got a call from urology with good news. Based on the amount of urine we’ve been getting at each cath Mason’s schedule can be changed. Now we only have to cath him every 12 hours! That’s twice a day and both times can fall in hours he’s normally awake. We’re going with 8AM and 8PM. No more waking him in the middle of the night!!
Even better, the urologist told us what amount to watch for. If we’re consistently getting more than 45mL of urine when we cath him we need to cath more often – trying every 8 hours. So far we’re well below that amount. The most we’ve gotten is less than half that – 22mL. We’re to keep track for a week and let them know what we’re getting, then they’ll consider moving him to cathing once a day. Honestly I can live with cathing twice a day if that’s the best way to protect Mason’s kidneys and bladder, it fits in our day easily. However every diaper that Mason pees in on his own is a blessing – it shows us that those muscles are working some on their own.
I don’t know what we’ll end up needing to do ultimately. I have some hope that as Mason gets older he’ll learn to use those muscles on purpose to empty his bladder and we’ll not need to cath at all. I think it is possible because right now when he gets upset during a cath he tightens up those muscles and literally pushes the catheter tube out. Right now only God knows what will happen.