Mable and I met in High school in 1977. We shared the same homeroom. Mable was a majorette and I was a football player. We immediately hit it off. We started dating on September 22, 1977 and have been together since. We graduated Anacostia high school in 1979. As most high school sweethearts do, Mable went away to the University of Maryland Eastern Shore and I stayed locally in the Washington DC area. We met as often as we could and eventually she transferred to Howard University in the DC area. We continued to date as the years past, and In 1983, Mable got pregnant with our first child, our son Dmitri was born August 11. In 1984 we both graduated from our perspective colleges. It was such a happy time for us, we got an apartment and started to build out family. I proposed to Mable in 1984 and on June 29th, 1985 we were married in our hometown of Washington, DC. In 1987, Mable became pregnant with our 2nd child Brittany. We pondered names and I was overruled for the naming of the first girl. I continued to work while Mable took care of the kids and started her master's degree program. In 1989, I received a promotion which included relocating to Mount Laurel New Jersey. We spent a short amount of time renting and then the big moment came. We purchased our first home. It was a great feeling of ownership and gave us a great place to raise the children. The house was beautiful and the school system excellent for the kids. Mable and I took in and raised Mable's niece as we had plenty of room for family. As we continued to build on our lives together we encountered ups and downs along the way but between the 2 of us we were always very happy. All 3 kids graduated from college which showed our success as parents.
On January 15th 2013, as Mable was working from home we noticed that her face was slightly distorted and she complained of her arms and legs feeling heavy. We rushed her to the trauma center where the assessed that she had a stroke. She was paralyzed on 1 side but was able to walk, talk and eat. After a week in the hospital it was determined that she was ready for rehabilitation. She was transported to the a local rehabilitation center. By the time that she had gotten to the rehabilitation center she had suffered another stroke and was completely paralyzed and could not speak. We then moved her back to the Robert Wood Johnson trauma center where the doctors determined that she had a clot at her brain stem. The options were Mable to have surgery to put in stints or to put her on a morphine drip and let her pass as her chances of survival were slim. We were then also advised that there was a 90% chance that she would not make it through surgery and that Mable's kidneys would fail. The family gathered and asked the following question" Is she in control of her mental faculties?" After an assessment it was determined that she was in full control of her faculties and while she could not move she had full feelings in all of her extremities. This was a very easy discussion for the family with hopes that rehabilitation would be successful. The surgery was performed and Mable came through with flying colors. She not only survived, her kidneys did not fail. That night after the surgery her stints collapsed. She was in for another surgery that next day. The surgeons inserted another stint and it has held true to this day. After 2 weeks in Robert Wood trauma center Mable was transferred to another center for rehabilitation, once there it was determined that she was suffering from Lock-in Syndrome and the level of rehabilitation was uncertain. Mable started rehabilitation and there was progress but it came very slowly. She regained the ability to move her head from right to left and could involuntarily move her legs and hand. During her stay at this second rehab, Mable was mishandled by a hospital employee and ended up with bruises and had to be taken to the local hospital. At this point, Mable did not feel safe staying in the hospital so we brought her home. We purchased and hospital bed and hired a nursing service. During this time I inquired with Medicaid for help and was told that I had to spend my retirement and pension money down before she would be eligible for Medicaid. At this point I have exhausted all of my retirement and pension money to the sum of $450,000.00 and am now in the whole with the nursing agency for $103,000.00. This whole event has taken its toll on our family which has drained us physically, mentally and emotionally. Now that I've spent all of the money in my pensions and retirement funds I am looking for help to pay the nursing bills and to help until I can get the Medicaid process completed. In the past 2 weeks Mable has shown progress in swallowing and moving her mouth. Which gives us hope that she will regain other motor functions as time goes on? We've found that the key is physical, occupational and speech therapy.
Due to mishandling at two rehabilitation facilities, my mother is currently home with 24 hour nursing and no rehabilitation because Aetna has little knowledge on her condition and has taken it away. To private pay for everything is costly and there are little to no quality places that will accept my mother because of her condition. For those who do not know locked-in syndrome is when a person is fully competent and aware of what is going on, she can feel, but can only blink or shift her eyes to communicate. She is paralyzed from the neck down. Recently we hit a huge milestone and she had her tracheotomy removed so she is fully breathing and swallowing her secretions on her own. We recently started pleasure feeds in hopes that her g-tube in her stomach may also come out in due time. She has regained the muscles in her face and her voice works involuntarily at the moment. Sometimes she can move her leg or arm a little. In order for these little milestones to stick, she needs therapy. In England and Australia there are many cases of people with locked-in syndrome regaining most if not all functions back with really good nursing and good therapy. Please help me save my best friend.
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