Our sister S's story was a nightmare. A healthy 32-year-old, she woke up one morning with numbness and tingling in her hands and feet. Thinking it was strange, she brushed it off and attributed it to overdoing it during her last yoga session. But when she woke up two days later unable to lift her arms or support her own weight she came to the ED and was soon admitted to the neuro intermediary care unit (NIMU). In 4 short days, S had become completely paralyzed without a known cause. Following a battery of tests, assessments, and imaging, an incredibly scary diagnosis followed, she had Guillan Barre Syndrome or GBS, a rare but serious autoimmune disorder in which the body's immune system attacks healthy nerves, leading to muscle weakness, numbness throughout the body and paralysis. GBS has no known cause.
Over the course of the next 41 days, S's GBS waxed and waned - she would improve for several days and then would worsen and require additional treatments. She relapsed two additional times and required 15 rounds of plasma exchange before she started showing significant signs of improvement. Through her medical journey, she was moved multiple times between the Neuro Intensive Care Unit, the NIMU and 6 Central Acute Care. Through these transfers, S soon came to know a nurse from her Acute Care unit that would forever hold a special place in her heart, Beth Mostellar.
You can imagine just how challenging it would be to go from being fully independent and functional one day to being completely paralyzed (but mentally intact) several days later. As GBS is a fairly rare condition, it was sometimes hard for care providers to understand just how difficult this was for my sister. She needed help with all of her basic daily care needs even though she looked completely normal and was able to speak. At her worst, she couldn't lift her own finger or shift her own hips in the bed.
When S first arrived on 6 Central, she immediately developed a connection with Beth. Not only was Beth an amazing nurse and attentive to her needs, but Beth was the first to treat S like a person and not just a patient. She encouraged S to be an active participant in her own care and she allowed S to make decisions about simple things like food choices and medication times. She gave S back some of the control that she had lost with the onset of her disease.
Beth was an outstanding advocate for S. Recognizing that the timing of some of her home medications was off and hearing from S that her initial requests had been overlooked while the team managed her complex condition, Beth paged the medical team to the bedside so they could speak directly with S and retime the medications appropriately.
A common symptom of GBS is extreme skin sensitivity along with full-body numbness and tingling. One morning, Beth noticed that S's sensitivity had dramatically increased and the pain caused by her numbness and tingling had worsened. She immediately contacted the team to request a consult so that her medications could be adjusted to keep her comfortable. She also advocated for the addition of a new medication that she had seen used successfully with other GBS patients.
Following her first relapse, S was transferred back to the NNICU after having a few great days on the floor. She had regained some strength and a little range of motion but it declined very rapidly one morning. Her breathing had become so labored that the team was thinking she'd need to be intubated. When Beth learned about her transfer, she stayed one afternoon beyond her shift to visit with S on the unit. Walking into the room, she became tearful seeing just how big of a change this was. It meant so much to S that she had taken the time to visit but also to know that Beth, too, was hit hard by this setback because of how caring of a nurse she was.
Diplomatic in her approach, Beth also collectively brought the team together on multiple occasions to ensure everyone was on the same page about the complex components of S's care, always including S in the discussion and always making sure that S's requests were heard.
As a family member and a nurse myself, I, too, can speak to the genuine authenticity that Beth exudes. One afternoon, mid-way through her stay and before her first relapse, as S was preparing for the possibility to transfer to a Skilled Nursing Facility, we learned unexpectedly that a formality would potentially delay her transfer by several weeks. While I stood at the front desk, asking so many questions of the Case Manager and barely able to speak through my own tears of how unfair this was to my sister and to her recovery, I glanced over to see Beth charting at a nearby computer. I noticed tears running down her cheeks as she was within earshot of the discussion. She never glanced up from the computer as to not interfere in the discussion but I can only imagine that she was feeling exactly what I was feeling at that time. I will never forget exactly how that made me feel to know that she was also sharing in that experience with us, albeit from across the room.
In the end, Beth went above and beyond to make sure S was getting the care she needed. She was kind, caring, and compassionate in ways that go beyond the limits of words. Amidst the scary, uncontrollable situation S faced with GBS, Beth made her feel safe and "normal" again. She is an extraordinary care provider, an amazing human being, and became a great "friend" to my sister during her stay on 6 Central. She is a true DAISY Nurse.
Here at the end of her 41-day stay, S's team suspects she has CIDP, a chronic form of GBS, so we know her medical journey is likely not yet over. But through her experiences and with the exceptional care she received from amazing nurses like Beth, she is not afraid to face her diagnosis head-on. Our entire family will be forever grateful for all that Beth did to support her along the way.