As she lay there, hands strapped down so if she did awaken she would not be able to pull out her ventilator tube, I looked on in terror. I suited up from head to toe with mask, gloves and gown just to be able to walk in to a room so contagious with this virus. The drain tube was not draining and her eyes were beginning to swell and drain and then her ears began to drain. According to CDC (Center for Disease Control) that was a good sign – it meant the infection was releasing pressure from her brain, it had to get out one way or another or it would kill her. They were using every antibiotic they could think of and then some.
One week passed nothing, two weeks passed nothing, then we were faced with the inevitable question, have you considered cutting off life support? I knew this was coming, but to watch my Mother as they told her this was the best we were ever going to get from my sister was like having someone reach inside my chest and rip my heart just far enough from my body to almost stop my own life. No, no, no but no, my Mother screamed at those doctors. She will get better as long as there is a God she will get better. I sent my Mother home that night, she needed rest, she was becoming ill, not from sickness but exhaustion.
The next day I met with the doctors. I explained my family’s faith, of how many times we had been faced with similar situations, of having to make those life and death decisions and for us death was never an option, for when God decides it is our time to go not even a respirator will keep us alive. I introduced them to the woman, to Star Ellis, not to the patient in bed #8, but to the vibrant, vivacious 43 year old mother of two who had struggled with an opiate addiction for 20 years, who had overdosed more times than we probably actually knew of, and God didn't take her then, why would I sit there and believe her time was up now and he was going to leave it up to us whether she lived or died? That is not our choice.
Shortly after all this my sister began to open her eyes, slowly they opened, at first just one. She would blink rapidly for sometimes an hour and then there it came, opening up to look me straight in the eyes, as tears rolled down her face. The swelling had gone completely and they had put a trach in her throat so now her face was free of any tubes, she had a feeding rube now inserted into her stomach. She was so beautiful, not one wrinkle to see, it was as though she had taken a beauty rest. All signs of stress were gone, she just lay there in all her beauty. If not for seeing her from the head down and all the monitors you wouldn't know she was sick, but she was and fighting for her life very second of every day.
Weeks five and six rolled around and the doctors still would not leave my Mother alone, they wanted a decision made to take my sister off life support. My Mother said it was not up to her but my sister’s oldest son who is an opiate addict himself. I explained to the doctors he was incapable of decision making for himself due to the addiction let alone on the care of my sister.
God is Good! As we sat there it began, my sister began to waken more and more, staying awake for several minutes to actually a couple of hours. The Surgical Critical Care Unit verified the bacterial meningitis was gone but unfortunately she had contracted Acinetobacter from the Critical Care Unit. This grows within the tubing of the respirators, feeding tubes, etc and is resistant to antibiotic treatment and deadly. If my sister could not fight off this one it could very well kill her.
My sister was moved into a room three days ago. The woman they said would be on life support for the rest of her life is starting to be weaned, she went without the respirator for two hours and 45 minutes on Wednesday. Her new doctor has never once said she would be on it forever, instead he is very optimistic that she will come off.
She has now moved her left hand and moves her head from side to side, and she smiles that crooked smile, but to see those beautiful blue eyes, I can't wait. Mom puts the phone to her ear so I can talk to her and she said my sister cries the biggest tears. So no, she isn't deaf and she knows who we are and has feelings and emotions.
We may not get the Star we once knew back 100%, but what we do get back will be a definite miracle in itself. Star and I use to sit and talk about what our purpose was in life. Neither one of us really knew, sometimes I thought hers was just to make people smile, mine was to be a writer, hers was to stand behind me and be my cheerleader. Now I think without a doubt Star’s reason for existence is to give people hope and introduce them to the word Faith and Christ.
It will be two months on January 26th 2011 since she collapsed, and in those two months I have to say she has made tremendous progress. Whatever happened to the faith of a grain of mustard seed? If it can move mountains, just think what a heart full of faith can do! Amen.
December 2011 update
Star has survived, but still lies in a hospital bed in a small community hospital that is unequipped to help provide her with the necessary equipment and rehabilitation she needs to help with any recovery. They have helped by teaching her to eat again, and she can drink her favourite soda, Dr Pepper!
She is also talking now, not as you and I do. She can whisper sometimes if the vibrations in her larynx are strong enough – they hope to do the surgery soon to place the valve in her respirator so she can talk once again. During the first surgery a blood clot formed and Star almost died so it was put off indefinitely.
She is now eating three meals a day plus snacks! Her body may be paralyzed but the woman that once had no brain activity is pretty dang active now and has a lot to say. She says she doesn't remember anything that has happened during this past year and that is probably a good thing.
I began the petition to get STAR'S LAW before our State Representatives and it has been very hard to get people to sign on. I just continue to work to educate and keep people aware of meningitis.
We are not sure exactly what side effects Star has because no evaluations have been done. She is in a small community hospital that sits out in the country and as beautiful as it is and as nice as the staff are Star needs so much more. I have been fortunate enough to have been introduced through the Christopher and Dana Reeves Foundation to Dr William Bodenek who is Director of one of the few Rehabilitation Facilities in the South East that have the Model System expertise that is needed to help Star in her efforts to begin the therapy and rehab she so desperately needs.
Star shall prevail, yes she was struck down by meningitis and had we known of the vaccine it probably could have been prevented but we didn't, so now I will continue my efforts to help my sister, to keep the awareness of meningitis and the urgent need to vaccinate alive until something is done here in the US.
I am so thankful that I have MRF to help in sharing Star's story and to continue to give me information on meningitis. I hope that my next story will be telling you about Star's ability to speak out loud, to laugh out loud; now that would be a beautiful sound!