Wednesday, October 10, 2007

Amanda Brown

Amanda Brown
My Daughter – My Hero

This is about my beautiful 14 year old daughter; Amanda that fell off her bike on May 10th, 2007 lost her footing and fell. After falling she rode her bike home and only complained of her left side which she had scraped when falling. Approx. 40 minutes later she began to scream in a very shrill voice, at that time she was rushed by her Father (JJ) and I her Mother (Sandra) following behind because at that time we didn't know how very serious her condition was - - we took her to Albemarle Hospital in Elizabeth City, NC and then the Doctors advised approximately 30 minutes later that Amanda was being airlifted to CHKD-Norfolk, VA. Amanda had immediate brain surgery suffering a fracture and blood clot. Two days after the surgery Amanda suffered a stroke. On Saturday, May 12, 2007 we were told Amanda was a very very sick girl and they were giving her a 40% chance of living. On two other occasions we almost lost her again once due to an infection and the other due to respiratory issues. She was at CHKD-Norfolk, VA spending most of her days in the Pediatric ICU Unit until July 25th at that time Amanda was transferred to the Regional Rehab at Pitt County Memorial Hospital in Greenville, NC.
Amanda's eyes are open but she is still in a semi-conscious state. While in ICU she had surgery for a trach and feeding tube. During her stay at the rehab she received 3 ½ hours of rehab per day, this included physical therapy, occupational therapy, recreational therapy and speech therapy. Plus 30-45 minutes per day of school during Monday through Friday. During her stay in rehab the trach was removed and Amanda tried so very hard to communicate. From all reports from the Therapist and Resident Doctor we were told Amanda was making progress but sometime during the week of September 3, 2007 – Dr. Crawl the Doctor in charge of Amanda’s case decided Amanda’s progress was not quick enough and refused to make the pier to pier call to Blue Cross Blue Shield of NC that was required for BCBS NC to consider approving additional time at the rehab unit so therefore BCBS NC denied any further approval of this rehab I was advised my only choice was to bring my daughter home. Which on August 28th BCBSNC had verbally told the Case Manager at Pitt County Rehab that BCBSNC was no longer going to approve additional time for Amanda after that week but on August 30, 2007 the Case Worker, Kim Baker, of BCBSNC advised me to stay until the next Thursday at which time BCBSNC would reassess her progress and decide if they would continue approval. A call was received at 7:30 a.m. on September 6, 2007 advising BCBSNC had denied further rehab at Pitt County so we drove to Greenville, NC that morning to pick-up my Daughter. We left with my Amanda, 2 large bags with 24 hours of medications and 14 scripts to have filled by the next day. My husband and I have become rehab specialist doctors and nurses within a very short period of time. We love having Amanda home but we are so very scared without the proper training or knowledge we could do something gravely wrong. Since we have been home we were supplied with an RN Nurse 1 time per week - Physical and Occupational Therapy a total of 30 visits between them for the entire incident. Also 3- visits for the Speech Therapist. We live in a very rural community so therefore we do not have access to what is required for my daughter to get the best therapy and a chance at life.
While in ICU at CHKD Norfolk, VA and Regional Rehab in Greenville, NC a formal request was done for approval of the Cumberland Hospital in New Kent County, VA. Cumberland Hospital has approved Amanda and really wants to help her but Blue Cross Blue Shield of NC will not approve her for additional assistance. Also, Medicaid which Amanda has been approved for has advised due to Federal Regulation 42 CFR 433.139(b)(1) they can’t override a decision of location of treatment but In the event that Amanda exhausts her benefits through BCBSNC, Medicaid will become the primary payer and will reevaluate her request.
This entire fight for the help that my daughter is entitled to and desperately needs has been unbelievable. We also have a 6 year old son that we are trying to maintain stability and normalcy in his life. Our home is not equipped or large enough for the equipment that is required – therefore my husband has to lift my daughter at 118 lbs to and from rooms. We did receive a Hoyer Lift until this past Friday, September 14, 2007 but it will not fit through the bathroom door or throughout her bedroom. As Amanda’s Mother and Advocate I have begged and pleaded to many people but thus far BCBSNC and Medicaid will not approve the help that Amanda needs to become the 14 year old teenager and a chance at life. Her Neurologist, Dr. Jerry Pinix with CHKD Norfolk, VA advised us that to fight for intense rehabilitation so Amanda could have the opportunity at life with the most potential possible.
Amanda is a very special person to so many people and always had a smile on her face that would light up the world. My daughter went through life always wanting people to like her - - she just never knew how much she is loved. Our family, friends and community have been such a wonderful support system. Unless you have ever been through this experience or one similar you just don't realize how life changing it can be. We all pray every day for Amanda to wake up and return to us, we miss her so very much and this world is just missing something so precious without Amanda in it.
As Amanda Brown’s Mother I am begging and pleading that someone will read this letter and help us to achieve the assistance that should be given without such a huge fight. My daughter is so very alert and with the right therapy we feel she could achieve a better chance that a 14 year old deserves in this world.
Thank you in advance for taking the time to view this letter.

Sandra Brown – Proud Parent of Amanda Nicole Brown
#252-619-1248 Address: 306 Holland Drive, Camden, NC 27921

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