I missed Anna's last urology appointment. It was my first week of work at Big Financial Institution and Rich's last week of unemployment so Rich brought Anna alone. The problem with these appointments is that it I find it somewhat difficult to decipher exactly what is going on with Anna and what her future urological issues will be. One adult with a crazy, active toddler and a Urologist with a heavy, Russian accent is a perfect recipe for a hectic, slightly confusing appointment.
That appointment was during the first week in July.
Rich's report from the appointment was that her Urologist wanted her to have another kidney and bladder ultrasound, which she had in August. I'm assuming that the ultrasound was to confirm that her bladder and kidneys have been growing as they should. She has had previous ultrasounds, which we were told would be used as a baseline.
Her Urologist started her on new medication. She's been taking it for over a month now. My understanding is that the new meds are supposed to help her bladder become softer and hold more urine. We have been told that she has a neurogenic bladder, which is a common condition of those with spina bifida. She basically has no control over her bladder. In addition, the doctors have come to the conclusion that her bladder is not as soft as it should be and therefore, does not hold as much urine as it should.
We were told that the new meds would help her bladder to hold more urine, which is why we needed to start cathing her. If her bladder is full and not emptying correctly, it can back up into her kidneys and cause an infection. She has already been diagnosed with reflux in her right kidney.
The first week of cathing was miserable. Grammy, Rich and I believe that she may have some feeling down there. Why else would she cry right as you insert the tube? How else would she know to grab right in that area? If she can't feel anything, she would just be annoyed at being on the changing table with someone holding her legs not crying at specific times.
At first, one of our main concerns was that there are some days when Grammy doesn't have any help. How was she supposed to cath Anna alone? Especially when we were told that she HAD to be cathed every few hours. Our health insurance company approved 12 nursing visits. 12! If the nurse has to come 3 times a day, that's 4 days of coverage. We were told that we would have to apply for coverage after every 12 visits. This all occurred around the end of August.
I arrived home one day after work (this was during a week of OT hell) to hear that Anna was cooperating with the cathing and that we could cancel the nurse. What? Grammy's secret was to give Anna her wristwatch to play with.
Grammy and I have become cathing experts. Anna fully cooperates, lifts her legs when asked, and usually hangs out on the changing table without too much complaining. I still believe that she has some feeling as she wiggles and makes noise when the tube is in place.
A few weeks ago, I arrived home to find Anna with a bright, red face almost as if she had a sunburn. She felt warm but not feverish and Grammy had already checked her temperature. After a few calls, Rich was told that her new meds can cause hot flashes. At this point, I started doing some research on the internet to see what I could find out about the meds. I discovered that this medicine can be used to control urine leakage. I thought it was help her bladder hold more urine by making it softer not by controlling her muscles.
So what does Anna's urological future hold? Who knows? I don't even think her urologist knows. Is she going to have to be cathed for the rest of her life? She does still pee whether it is from leaking or she does it on her own. She can't always wear diapers. Is she going to have to take this medication FOREVER? At one of Anna's first appointments when she was only a month old, her urologist told us that with treatments, she would be "socially acceptable." Ummm, maybe society needs to change. Not Anna.
Anna has another appointment coming up soon. Rich and I will both be attending. Maybe between the two of us, we can ask the right questions. Get the right answers. And figure out what is best for Anna.
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