For the past two years, each November 1st, our therapy department receives a thank you card from a very special patient and her family. This is the anniversary of what she feels was the beginning of the biggest accomplishment of her life- the day she stood for seven seconds!
This young woman came to our swing bed program with report that she would be ‘bed bound’ for the remainder of her life after narrowly surviving extreme odds. She had severe global Muscle Wasting caused by prolonged hospitalization for treatment of severe exacerbation of Myasthenia Gravis, critical Renal and Hepatic Failure, and severe Sepsis. She was a new grandmother, an active member of her community and church, and was not ready to “give up on life” as her previous physicians had warned.
We started slow, Speech Therapy with VitalStim treatments, PT and OT with simple active assisted range of motion of upper and lower extremities and sitting with the head of her bed elevated. After about a week, she was ready to sit on the edge of the bed. Because her skin was extremely fragile, we had to first apply several layers of skin protecting garments, both on the patient and on her bed, before we could begin. For the first week, she could first sit for 10 minutes, a couple of times per day with assist of three therapists to ensure her safety. Then, she could tolerate 30 minutes, several times per day, with two therapists with the introduction of seated active range of motion and core stability activities.
November 1st, 2011, with close family, her favorite nurse, and three therapists, she stood for the first time in three months! After two unsuccessful attempts to get into standing, on the third try we saw success and all instinctually began to shout “One. Two. Three…” She stood for seven seconds- the longest 7 seconds of her life, she jokes! She still tells us how well she can remember how she felt with weight bearing on her feet. ‘It was like my body remembered that it had legs and those legs are used for walking!’ From that point on, she was unstoppable! We spent hours training family members and select staff on exercises and activities to be completed on nights and weekends, always with extra attention given to her need for rest- as she would frequently try to work around the clock!
The next week, we approached the subject of power mobility. At first, she responded with tears, fearful that her therapists had just ‘built her up’ to believe that she would walk, but not believe it ourselves. We explained all of the benefits of a power chair- especially reiterating how important it is to be mindful of muscle overuse with Myasthenia Gravis. Wearily she agreed to meet with an Assistive Technology Professional (ATP), with her family encouraging her ‘explore all options’. This ATP was a known colleague of our new PT and was very experienced! He helped us further encourage her to never give up on walking, but understand that power mobility will only help her achieve her goals. Quickly she understood how tilt-in-space, pressure reduction, and adequate spinal support would actually improve her potential for full recovery and was very excited to receive her power chair on her last day with us. She and her family were now more motivated than ever!
Within her 11 week stay, she was discharged twice to acute care at our facility for sepsis and renal failure. But that didn’t stop her! She convinced her doctor and her therapists that she absolutely had to continue with any therapy she could tolerate. So, we kept going- sometimes regressing by weeks of progress. We worked closely with her doctor and nurses to monitor her medical status to ensure that treatment was safe for her- blood sugar (which could at anytime be asymptomatically 40 or 400), oxygen saturation, blood pressure, skin breakdown, temperature, and any other sign of failure in her multitude of severely impaired organ systems.
Because of her determination and the excellent team work of her therapists, physicians, nurses, and family, she was able get home by Christmas! On the very last day, she drove out to the nurse’s station on her ‘fancy pants’ wheel chair, where she stopped several feet before the elevator. Everyone was gathered to share their praises and blessings and reminisce on the turbulent days she had spent with all of them. Then, with what seemed like 100 supporters, she stood up, grabbed her rollator and walked to the elevator without any help. When the door opened, she turned and yelled out to everyone “I told you all I would walk out of here! And it’s all thanks to you!”
We still keep in touch. She and her husband are sure to visit whenever they can, always ‘showing off’ some new and exciting functional improvement. She now is able to walk significant distances with her rollator, which she no longer needs to use in her home. She doesn’t need any assistance with ADLs, and can eat whatever she wants! She always tries to give her therapists credit for her remarkable recovery, but we try even harder to ensure her that it is her refusal to give up that got her so far.