Meningitis in your words

Melissa Star Ellis's story

  • Location: USA
  • Categories: Bacterial meningitis
  • Age: Adult 25-59
  • Relationship: Brother or Sister
  • Outcome: Bereavement
  • After effects: After Effects
Melissa Star Ellis

On the day of Thanksgiving it wasn't a typical holiday, everyone wasn't in the hustle and bustle of preparing the usual holiday feast but instead trying to figure out why my younger sister Star age 43 wasn't getting better.

She had been having severe headaches for over two months, been the victim of two severe seizures, one of which she said caused the back of her neck to hurt severely, (the signs were all there, but nobody caught it). Star had been hospitalised and treated just weeks before and diagnosed with a severe sinus infection and sent home: however the headaches continued, the neck pain continued, she complained of earaches, no appetite, severe weight loss, dizziness, slurred speech and severe lethargy. She had been to both local hospitals and both had sent her back home.

The morning after Thanksgiving my Mother was thrown out of bed by the sound of my sister’s body crashing to the floor at approximately 7.30am. By the time she reached Star in the kitchen, she was already too weak to speak. 911 was dispatched to the house and arrived within minutes.

My Mother rushed to the local emergency room and was met by the ER physician who told her my sister was being air lifted to the Trauma Center in the next city.

"My sister was given a 5% chance for survival"

The University of Tennessee Hospital was on stand-by as my sister was flown 40 miles away. Twenty minutes later she was in surgery, a drain tube inserted into her brain and on life support to keep her alive. The team of neuro surgeons met my family and informed them my sister had one of the most severe cases of bacterial meningitis they had ever seen. The infection was at least a half inch thick just lying in a pool on top of her brain. She was also faced with blood clots and an abscess on her brain stem. My sister was given a 5% chance for survival.
I got the message from my niece that my sister lay dying in the Surgical Critical Care Unit. When I walked in I truly wasn't prepared for what I was to face. There lay a woman, with the front part of her head shaved and a rod protruding at least four inches out of her brain with a tube connected to a suction. There were bags and bags of medications and monitors for everything and anything to do with every vital sign from her heart beat to her blood pressure. There were suction lines in her nose and the one dreaded tube we never wanted to have to be faced with – the respirator, the life support – the line between life and death.

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!

January 2012 update

After battling the many infections and devastating side effects, Star lost her battle just five days after Christmas on December 29, 2011.

She had developed hydracephalitis (another form of fluid on the brain). She was taken to a nearby hospital after finally getting her insurance to agree to the transfer, but suffered a stroke just five days later which left her non-responsive and the doctors said she was at that point brain dead.

Full of sadness, my Mother was faced with the dreaded decision of releasing my sister to the Lord and at around three that afternoon she was disconnected from life support.

Star was laid to rest on New Year’s Day 2012. I miss my sweet sister and it has become my life’s ambition to continue education and awareness of this silent killer that took my beautiful Star from her children way too soon. I will not stop until STAR'S LAW is passed in Tn. and throughout the US. I will not sit by silently as this killer continues to attack the innocent and I will not let my sister’s death be in vain.

It is my mission to make sure that the vaccine be made a mandatory vaccination for all children aged 2-18 and all college age students. I cannot get my sister back but I can help other families not to have to suffer like my family has suffered from Star's battle with bacterial meningitis.

I am working to get The Starlight Hope Foundation up and running soon. This foundation will work to help those stricken with meningitis, to help the families with expenses and housing when their loved ones are hospitalised and worked to continue education and awareness. This disease can be stopped!! Awareness is the key.

Above are pictures of my last visit with my Miracle in the Making.

Letitia Carter
January 2011