ABI and TBI Support Group of Seminole County - Brain Injury

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So now our journey really begins!

Sterling Rose is my 25 year old daughter. She arrived by ambulance and entered a Florida hospital ICU on Dec 16th, 2016. She had a seizure and stopped breathing. She was given CPR by a female nurse, a woman who I will never know or be able to thank. She then went into respiratory failure and stopped breathing for several minutes. She died in the ambulance, they revived her. She was then in a non-stop 24 hour seizure activity for 2 days. I had to make the choice to put her in a medically induced coma in order to stop the seizures from occurring. It was the hardest thing I have ever done, essentially making my daughter brain dead. At the 6th day mark, Dr's told me "we have no hope for her". I was told that either she would never wake up, or if she did, she would be a complete vegetable for the rest of her life. They told me she had zero brain activity. After speaking with every dr and 3 neurologists, they all confirmed the same thing. They assured me there wasn't hope. My family caved in, my friends caved in, and I caved in and signed the paper. The hospital even went so far as to make palm prints of her hands (which I still have and are framed). I decided to go and talk to my daughter, to tell her goodbye in a positive way. I didn't beg her to stay, I simply said "If you can hear me, and need to move on, we will hopefully see each other again one day. If you can hear me and you want to stay, I need to know." In that moment, she had a reaction. She had tears and her face grimaced. This was no reflex, as the doctor was telling me. This was my daughter and the only way she could communicate to me. I yelled "NO! I take back my signature! That is my daughter and she needs rest, time, and healing!" Even after my decision to rescind the DNR, family and dr's tried to talk me out of it by saying "You have no idea the person she will be when she wakes up." I had faith, I had a gut feeling. I talked from that point on in reference to a person that would wake up and be ok. I was right. Her first real movement weeks later was when I asked her to move her pinky toe. She did! I have it on film! It was so exciting because that meant she understood commands, she was THERE! After that, she smiled when I told her I was watching a tv show she had begged me for months to watch. That's when I knew she had memory! Everything was going to be ok!

Today, she talks, eats by herself, has her full memory including remembering conversations she heard in her coma, the pain she felt in her coma, etc. And she was not intellectually affected. What was affected was the ocular part of her brain, so she will forever have problems with her previously perfect eyesight. It's hard to read although she can do it, she sees a lot of blurriness. In my eyes, and thousands of other's eyes, she is a living miracle. And, she has physical limitations too. She is a fall risk and has fallen over a dozen times since her initial incident. The last fall resulted in stitches in her eyelid.

The main reason dr's didn't know she was alert in her coma, is because she has a rare condition called Lance Adams Syndrome. Only 11% of people wake up from this, of those, only 3% go on to live healthy lives. The rest die. My daughter not only woke up from a coma, she is one of that low 3% that live a healthy life. She has tremors from this condition, throughout her whole body, 24 hours a day. Imagine having muscle cramping all day everywhere. This is her life. The more tremors she has, the more her body hurts from the tightening up from pain and the muscle work going on. So, sadly, she lives in a life of pain every day. Florida didn't expand medical coverage to adults, even those with disabilities, so she's out of luck on good insurance. She was required to show proof of $750 worth of medical bills EVERY month before Medicaid will kick in. After A LOT of hard work, investigation, and crying & frustration, she is now on the Florida State Medicaid Waiver. She will qualify for Medicare beginning June 2019, after a requirement of being on SSDI for 2 years will have been met. I do not qualify yet for caretaker stipend until that time as well. I have been her full-time caretaker since she was in the hospital. I have been with my child for 24 hours a day, 7 days a week, with very, very little help from friends. The amount of friends we lost after this was overwhelming, especially for her. People are for the most part too busy or too scared of who she is "now". Sterling, however, is a fully capable person with physical setbacks only. She needs to be in a wheelchair. She is a high fall risk. For this reason, I need to be with her anytime she stands up to use the restroom. Other than that, she is bed bound. She does not receive physical therapy and this is one of our top priorities for her. This is NOT how I saw my daughter's life planned out. No mother wants this for their child.

We want to be here for other survivors, caregivers, family, friends, and who ever else wants to know more information on Brain Injuries. We are planning on having local meetings once a place is set. From some initial posts I put out on Facebook, there is a HIGH need for this here in Seminole County. It is time my daughter and I pay it forward and do the work we are here to do.

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