Urinary Tract Infection - Take Two

A fortnight ago, Chaya treated us to some more spikey fevers. So it was off to the pediatrician again. While in the waiting room, I snapped a shot of a painting I did and which I gave the doctor many years ago in gratitude for his unflagging devotion to Chaya. He's hung it right next to a Mary Cassat. His generosity know no bounds.

But we could have avoided that trek to his clinic since he suspected it was a return of C.'s Proteus Mirabilis (a version of UTI - urinary tract infection) as soon as he heard she had high fevers without any apparent symptoms. I wrote about it here: Mea culpa.

But when I called her in advance of bringing Chaya to her, the nurse at our Kupah clinic was extremely reluctant to take a second catheter-urine sample. She had done the one preceding the first round of Proteus M. and it was smooth going. 

We now had an explicit written request from Chaya's doctor that she repeat it. But she expounded on the risk of catheter-introduced infection and how those fevers could be from aspirational pneumonia (even though I assured her she had no related symptoms. She stressed that a physical exam should be done first. 

I wasn't a match for her. But when I related all that to our perenially sweet doctor, he was truly pissed off. "I hate to pull rank, but..." was his response.

Anyway, a long story short, as I said, Chaya was thoroughly examined and no symptoms were found. The following day,  the nurse took up her catheter for us. 

Chaya has now completed her course of Zinnat. The new challenge is preventing another recurrence. A few of the doctor's tips: Don't let her become constipated (who knew that could trigger a UTI?);  keep her well hydrated; give her cranberry juice.

We have a neurologist's appointment lined up for this week which Arnold arranged. We'll probably go without Chaya just to discuss the meds she's on. Since they aren't delivering any more control than we had prior to her hospitalization back in December 2017 (for status epilepticus), I am keen to lower the Keppra and remove the Vimpat. That was her pre-hospitalization regimen.

I am dreading this encounter with the neurologist because she was one of the doctors in the hospital back in December who bombarded Chaya with meds to the point of semi-consciousness and was prepared to release her in that state. The hitch is, though, that we can only access the wise neurologist who saved her from all those meds via this neurologist. The wise one doesn't treat patients outside the hospital ward.

And who would have imagined that the ubiquitous but unnoticed straw would one day become a contentious item? And central to the fight for disability rights too? Well, that day has arrived. The issues are explained here.

Silver-lining playbook

I know I haven't written for a while. But there just wasn't anything earth-shattering to report and blogs aren't meant to be tiresome, right?

But sometimes raising my daughter Chaya is like that - devoid of drama, the same old same old. No progress, no light at the end of the tunnel.

And trying though that is, it may not be the worst-case scenario. I've mentioned before that I collect my granddaughter from her kindergarten once a week. It's situated in a building that houses a center for afternoon activities for children with disabilities. Some would be termed "severe", I suppose, but none approach the gravity of Chaya's.

I watch them longingly. Their parents, I imagine, must bemoan their children's impairments, mild or moderate though they are. And indeed, many must be supervised closely every minute which is why the center has an cadre of young volunteers who patiently guide, coax, sometimes drag the children and teens away from trouble and to various productive activities.

But this week I observed one of those children, many of whom have Downs as this girl of about ten did. She sat on the ground of the playground where my granddaughter and her little brother played. The volunteer aide at her side walked off for a few seconds to tend to another child. This girl, apparently uninterested in the equipment or in her friends, rocked herself a bit and then scratched her red cheeked face ferociously. 

Next, she grabbed a passing child's ponytail and pulled it hard. As I ran to intervene, the victim's brother rescued her and then made for the girl with Downs. When I explained to him that the girl didn't understand what she'd done, he backed off. .

Upon her return, the volunteer aide gathered that something had happened and asked me for details. Then she and another volunteer exhorted the girl with Downs to keep her hands to herself, apparently a mantra that is frequently drummed into her, clearly to no avail: an instant later she was digging her nails into the leg of one of the aides.

I felt momentary relief that my Chaya doesn't pose such problems for us, regardless of the steep price we pay for her "good behavior".

Here (above) is Chaya at the beach during our extended-family beach getaway this past weekend. One of her nieces is with her.