Bunn’s Prairie

Since the last time I made post here, Kaley has been in and out of the hospital.  She went in with bleeding again, much like last time, combined with blood in her stool.  They attributed this to the 3 different bacteria they found in her urine.  I sounded the alarm in the fist place when I brought her home for an overnight 2 weeks ago.  After she used the camode, I suspected she had a urinary tract infection (UTI).  The nurse I am most comfortable with looked at Kaley’s medical records with me.  We concluded that Kaley may still have had an infection dating back to Labor day.  The nurse manager said we mis-interpreted these results.  I disagree, especially as the species of bacteria came back the same (and sensitivities to anti-biotics) as at Labor day.  In any case, the ER had some good feed back for the nursing home has to the hygene level they were maintaining.  Between that and the fact that I have been championing for the nursing home staff to put Kaley on the camode (even if she says she doesn’t need to use it) for several months.   They finally agreed.<rant>Funny how a severe infection probably caused by poor-hygiene causes professional medical staff to change their care plans.   Too bad they don’t listen to family from the get go.  </rant>In any case, Kaley is back at Hopkins on 2 different antibiotics.  PT had discharged her from their care during the past few weeks due to lack of progress over the past month.  I argued that, they were not being fair to Kaley as they cannot judge her progress (or lack there of) while she had a UTI.  Coincidentally Kaley’s “lack of progress” coincided precisely with her UTI (or lack there of, depending on who you believe).  Note to current or future health care advocates:  Do not trust your care givers out of hand, as they are predisposed (consciously or unconsciously) to accept whatever best serves their purpose even if the evidence does not support their claim.  I received some kudos from the admitting physician at the hospital for identifying Kaley’s UTI well before the nursing home staff and for advocating appropriately for her. In any case, Kaley is back in Hopkins and doing well. The staff have agreed to get Kaley on the camode every couple of hours regardless of if Kaley says she has to go or not.   This is the first step in retraining Kaley on how to use the toilet.   If we can teach her that if she hold’s “it” then a toilet (or camode) will be made available for her then she may re-learn what it feels like to need to use the restroom.  (note the nursing home staff were adamantly against this move claiming “patient rights.”  However after I threatened to sue them claiming president about use of restraints (if medically beneficial in cases where the patient was deemed incompetent (Kaley would easily fit into this bucket)) they begrudgingly agreed to follow my wishes (as her legal health care advocate).

This experience has only helped reinforce my believe the health care facilities are only in business to make a profit and not to serve patients’ best interest.  To be fair, in this case, they were probably worried about  being sued which is a different issue which I will not address here (as I would not sue a health care provider if they expressed reservations about my recommendation yet followed it anyways).

Kaley’s first overnight home was a relative success. That being said, taking care of Kaley is a lot of work! The way they’ve got Kaley’s meds spread out, they end up doing giving her meds every couple/few hours (even into the night). Having both meds at midnight and 6 AM kind of sucked. And giving magnesium in pill form (versus elixir form) really sucks (as it is insoluble in water). Every time I gave mag, it took a half hour. I never spent a half hour giving meds before. To be fair, she isn’t nauseous or sick at all, so perhaps this way is better. I don’t know. I didn’t sleep well that night. Having done all the work of caring for Kaley on Saturday, I ended the weekend down and depressed. This experience really shows just how far Kaley still has to go before she can come home (and how far she has fallen from the last time she spent the night at home). I don’t mean to diminish what she has done and how far she has come from her lowest point, that’s tremendous. Still we’ve got a long way still to go.

Kaley and I are going to try to have Kaley spend a night at home this Saturday night (Oct. 4th).   I am still waiting on hearing from the Knapp Rehab center to continue her recovery.  She will be leaving the nursing home sometime late Saterday afternoon and returning late Sunday morning.