Deborah's Stroke Recovery Fund

On May 8 my beautiful daughter, Deborah, went by ambulance to the Emergency Room due to headache, slurred speech and difficulty walking.



Unfortunately, the Emergency Room personnel treated her as if she were drunk or a drug addict, instead of a person having a stroke. They also gave her medications that have severe interactions with each other.  She became much worse about 4:00 a.m., yet no stroke alert was called. She was sent to the Neurological Unit for observation and at 10:50 a.m.  a nurse noticed the difference between her  condition at that time and how she had presented in the ER. She called the resident on duty who initiated the stroke alert, but it was too late for the early treatments that are so important. Deborah was intubated and sent to ICU. She had suffered bilateral pontine strokes in the brainstem and was diagnosed with Locked-In Syndrome. She could do nothing but blink her eyes. She was not expected to live. But Deborah is a fighter. She slowly began to recover.  She spent almost 3 weeks in ICU and was released from the hospital on July 12. At this point she is in a nursing home in St. Petersburg. She has some use of her right side and her left side is beginning to move. She has begun eating pureed foods, though still receives supplemental feeding through a PEG tube. She communicates mainly through a communication board and points at letters to spell words. She is struggling to regain speech. She needs assistance with all activities of daily living, such as eating, dressing, toileting, bathing, all hygiene tasks, and mobility.  Deborah participates in physical, occupational and speech therapy. Unfortunately, her insurance will only pay for 30 days maximum of Skilled nursing. Then, Deborah will go into "long-term care" and no longer be able to receive the therapies she needs to improve and become independent again.  Deborah also has a 10 year-old-son, Matthew, who we are now caring for in our home. We desparately wish to bring Deborah home, but our house is a tiny 2-bedroom house, and Matthew is in the second bedroom. Our home is also not wheelchair/handicapped accessible.  We have spoken to a contractor who can build us a small 400 square apartment for Deborah for around $25,000 plus the cost of appliances, fixtures, tile and furnishing it. The doors to the main house will also need to be widened, and ramps will need to be built into the main home, out the back door and into Deborah's apartment. Deborah will also need therapies which cost in the neighborhood of $65 an hour until she is eligible for services through the Long-Term and Elder Care Waiver. She currently receives an hour per day of each therapy and we need to keep this level of therapy up so she can continue to make progress.  There is a wait list for this waiver, so we do not know how long that may be. Consumable medical supplies such as briefs and wipes, which she also needs, are not covered by Medicaid. She will probably be eligible for a power wheelchair, but will need a transport wheelchair in order for us to take her to appointments and anywhere in the community as we do not have a wheelchair van. She will need other non-covered medical items such as a customized shower chair and grab bars, which are also not covered by Medicaid. Deborah will have to be in the nursing home for 60 days in order to be eligible for Long-Term Medicaid. At that point Deborah should be eligible for some in-home health care, though it sounds as if it is very limited. We may need to pay for additional personal care for her at that time. Our hope is to be able to build the apartment by September 12 and bring Deborah home soon thereafter. If anyone would like to donate briefs, wipes, or has tile, an apartment size stove, refrigerator, dishwasher, cabinets, or other items that might be useful in getting Deborah set up in the apartment, it would be greatly appreciated. Also, the care in the nursing home is very poor. We are unable to be there all the time due to work, caring for Matthew and the needs of the family. If anyone is available to sit with Deborah between the hours of 8 a.m. and 4 p.m. it would be greatly appreciated.

Donations

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  • Jean Pondside 
    • $20 
    • 35 mos
  • Jennifer Adkins  
    • $40 
    • 35 mos
  • Debra Estes 
    • $100 
    • 35 mos
  • Michelle Zimmerman 
    • $100 
    • 35 mos
  • Carolyn Adler 
    • $100 
    • 35 mos
See all

Organizer

Jane M. Whelan 
Organizer
Tampa, FL
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