When there's a problem I'm facing, I always feel better when I have some action steps to take to try to fix that problem.
Since Jonah's 2-11 stent removal surgery, I felt like we didn't have any action steps to try and fix the problem of getting rid of his catheter.
Today, Jonah had a urology appointment, and we got a plan! We got some action steps!
Unfortunately, there is a chance that none of these things might help Jonah, but at least we get to try something.
Jonah suffers from severe voiding dysfunction. For Jonah, this means he does not empty his bladder efficiently which causes urine to back up to his kidneys. This is what caused his severe kidney dialation (hydronephrosis) in August which is why he needed a stent and catheter.
We do not know exactly why Jonah holds back urine. The doctor is reasonably sure there is no physical problem that is causing Jonah to not empty his bladder efficiently. This leaves a behavioral reason (learned behavior/bad habit that is hard to break) or a cognitive reason (can't completely understand how to coordinate release of urine). Most likely, it is a combination of behavioral and cognitive.
So Jonah is going to get the following help to try and help him learn to pee more efficiently and safely:
1. MRI of spine to rule out any neurological issues (nerve damage) that might be hindering is ability to void efficiently. Dr. thinks there is a very low likelihood there is a neurological problem, but it is prudent for this to be checked.
2. Medication (Flomax) to help relax muscles for voiding
3. Targeted physical therapy focusing on pelvic floor muscles
4. Psychiatric help to work on behavioral issues regarding voiding
5. 2 hour voiding schedule
6. Check into possibility of sacral neuromodulation device implantation
As I said before, I like action steps. They help me feel less helpless about a difficult situation.
In particular, I am hoping and praying the medicine and the physical therapy help Jonah void efficiently and safely so that his suprapubic catheter can come out and not be a long-term necessity.
So let's go- literally!
Just some "urology" humor there...
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