While My Little One Sleeps

**VivaLasViejas**, ASN, RN

She lies in her narrow nursing-home bed with eyes closed and feet elevated on pillows, looking much like the little girl in the faded black-and-white photographs she showed me that first day in her new apartment. In her pink fleecy oversized pajamas with the white polka dots, she appears even more frail and childlike; and as I watch her sleep, I wish again with all my might that we had met sooner.......I'd been so close to solving the mystery that brought us together.

Until someone like Katie Wright* comes along and breaches that wall. Actually, she blew it to smithereens, and that's why I'm here tonight, standing in the doorway of her SNF room wondering whether to wake her and say hello, or just slip away and out of her life, as I probably should. She had a hemorrhagic stroke last week, and now she has to be hand-fed, turned and changed every 2 hours, and given her meds crushed in applesauce. She also has an alarm on her bed to alert staff to attempts to get up on her own, and she is on hospice. Her family has even begun already to move her belongings out of the apartment she occupied for such a short time, because her doctors have said she is no longer appropriate for assisted living.

I understand that. I've issued involuntary move-out notices before; when care needs become too complex to handle in our environment, the resident has to go to a facility where they can be managed.

That's what my logical mind says. I wish someone could explain it to my heart.

You see, we were so close to figuring out what was wrong with Katie. Up until last summer, she had been an independent 87-year-old retired professor from Australia who still drove, volunteered, and even took vacations on her own. Then she began to experience recurrent fainting spells that laid her out for hours if she didn't get into a reverse-Trendelenburg position quickly. She'd had syncopal episodes as a teenager which disappeared during her childbearing years, and they didn't interfere substantially with her life even when they reappeared in her 70s. But last September, she developed seizures and had several bad falls which landed her first in the hospital, then in a SNF for rehab so she could develop enough strength and balance to enable her to function in assisted living.

Katie was understandably disappointed at having to give up her home and her independence, but she was philosophical about it, and accepted her fate with as much grace as I've ever had the privilege to see. Professional distance went out the window as I fell head over heels in love with this tiny, dignified lady, who couldn't sit up longer than 20 minutes before she greyed out and needed to be put on the floor with her head down and her feet up. For all her physical difficulties, though, she has maintained a lively mind and an alert manner; she never forgets a name; and she's never, ever complained, not even the time her aide failed to answer her call light in time and she wound up hitting her head on the corner of a table as she slid to the floor.

In my own late middle age, I have found Katie to be a font of wisdom, even as she looked up to me for my medical knowledge. I already miss going in to check on her and being drawn into a lively and intelligent discussion about life, football, whatever's on the news....she'd even tackle politics and religion, although it's probably more fun because we agree on just about everything. And I guess I've been more to her than just a nurse, because when I was out sick for five days recently, her son called at 0800 on my first day back and begged me to go see her right away. "You bring so much light into her life," he told me on the phone. "She was worried about you, and she needs to know you're OK."

Funny, I thought it was the other way around.

Katie's condition continued to spiral downward. By Thanksgiving, the syncopal episodes were increasing in frequency; she began to vomit miserably after each meal; she couldn't take her pills without gagging. I didn't want to say anything, but I was reluctanly beginning to think it was time to consider hospice. Then one day after accompanying her to a doctor's appointment which turned to disaster---they'd kept her waiting too long, and when she headed for the floor they sent her to the ER---a friend of mine in Texas gave me some information on something I'd never heard of, a condition called Postural Orthostatic Tachycardia Syndrome. I researched it online and quickly found that the diagnosis fit Katie's symptoms to a "T". I was immediately excited, and shot a fax to the PCP for a neurology consult; what if all this was something that could be treated?

I talked with Katie and her family, cautiously optimistic that maybe, just maybe, we might be onto something. Diagnosing the condition wouldn't be easy; it wasn't the first thing that comes to mind, even among neurologists. It would take some experimentation with different meds and treatments, but even though we couldn't fix the problem, we might be able to help her get back into life again. The referral had been made, the appointment set for late January (the soonest we could get her in), when the medication aide walked into Katie's room with her pills early last Friday morning and found her on the floor by her bed, head leaning against the mattress. We called 911 because she was confused and we couldn't be sure she hadn't hit her head; her BP was in the toilet, her heart rate in the 120s.....all pretty much routine by now. So routine, in fact, that we expected her back by suppertime.

Now, a week later, I find myself a visitor in a place I don't want to see anyone in, and I'm cursing myself because this HURTS, damn it. I've been in healthcare for the better part of two decades; I know better than to let patients get under my skin like this. I should simply walk away before my heart winds up in tatters from loving this little woman so much and feeling like I've failed her when she needs me the most.

But even as I wipe my eyes and head to the car, I know I'll be back. Because my sadness and my pain aren't what's important now.....not while my "little one" sleeps, dreaming what I pray are dreams of her long-ago girlhood, when she used to run wild and free across the wide brown land of her birth.

While My Little One Sleeps

About VivaLasViejas, ASN, RN

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