We did come home with some changes, however, from urology. Mason has been growing and because his bladder medication to paralyze the bladder is based on weight it is time to increase his dose. However they want to switch him from a liquid to an extended release pill because the pill generally has few side effects while increasing the liquid will increase the side effects Mason deals will. So now we get to try to teach a 4 year old to swallow pills (he can't chew the pill without messing up the extended release). ***** Edited to update: Mason took his pill in a spoonful of applesauce this morning. We showed him we wanted him to just swallow the applesauce, he put the pill in the applesauce, and he swallowed, no problems, no chewing. Yay! At least that was easy.****
Once Mason has been on the new dose of medicine for a week we are also going to measure his urine output for his morning cathing. They want to see us getting out less than 200mL because more than that sitting in the bladder could increase the pressure enough to reflux urine backward into his kidneys (based on the results of his urodynamics test today, showing he doesn't leak even at 250mL but the pressure increases above 40 at that point, likely to mean reflux is happening at that stage instead of leaking urine). If he's holding more than 200mL in the mornings we will have to do one of two things:
- Add another cathing to his overnight schedule. Right now we cath Mason once in the middle of the night. We may have to set an alarm to get up a second time.
- Put a catheter in and leave it in overnight to drain his bladder. This option is actually my least favorite for a few reasons. First he would then be laying in a wet diaper all night, which really isn't good for his sensitive skin or for his growing up age (who wants to be in a wet diaper at age 4 or older?). Second, it would increase the likelihood of Mason getting urinary tract infections (which we've avoided so far). UTIs are pretty common in people who have to cath and leaving a catheter in overnight leaves a route for bacteria to travel right into the bladder all night long. UTIs mean antibiotics. Frequent antibiotics mean a messed up digestive system and building a resistance to antibiotics that you may actually need later on for more important things like serious illness or surgery recovery. Yep, I'm a bit opinionated on this one. Obviously we'll be going the getting up extra in the middle of the night to cath route if that is needed.
So there are this week's updates! Next week Mason has his PT evaluation to get a plan in place for working on core strength and ultimately on OT skills like putting on and taking off a shirt, drinking from a cup without falling backwards, etc. He also has his casting appointment with the orthotist who will be casting his trunk and making a custom back brace to sleep in. Hopefully we will also hear from the neurosurgeon next week with his plan for the next step related to Mason's tethered spinal cord.