As Ashlie lay in the hospital bed I watched her go from a vibrant young girl to a shell of non-existence. She was unable to walk, she was unable to get up to use the bathroom and as she couldn’t eat, an NG tube was placed in her nose so they could feed her. She was given intravenous immunoglobulins (IVIG), in the hope that this would stop the paralysis and start it descending.
She became delirious, and she began talking like a baby in her sleep. She was in extreme pain and I had no idea what to do, or even still did not realize at this point how serious GBS was.
Within 24 hours things went from bad to worse. Her respiratory system was shutting down. The GBS was paralyzing her to the point that she could not breathe.
She was rushed to the Pediatric Intensive Care Unit (PICU). Within minutes of being there she stopped breathing and they had to “bag” her. I could not believe what I was seeing. My baby girl was dying before my very eyes.
She could no longer talk and would finger spell (sign language) to communicate. They put her on a bi-pap machine to help her breathe and on July 1, 2009 Ashlie was intubated. She could no longer breathe on her own to keep alive, a machine had to do the work for her. Her heart was racing, ranging between 160-180 bpm. It seemed as though her heart would come through her chest. For the next 2 1/2 weeks, I sat and watched as she continued to get worse.
Guillain-Barre Syndrome is most common in older people, not children. It was the worst case the children’s hospital had seen in over 3 years. All treatments done to “reverse” GBS are done on adults. The hospital had to take adult treatments and alter them for a 12-year-old. She had more IVIG treatments done, she had plasmapheresis, MRI’s, and nerve tests done. The damage done to her nerves was horrific. The GBS not only destroyed her myelin, but it went into and began destroying the axon.
Slowly her body began to “heal” and the GBS started to descend. After 3 weeks of being intubated, she began to breathe on her own and was extubated. However, as the feeling came back, she was in excruciating pain. Pain so bad she felt like we were ripping her skin off if we touched her. We remained at the children’s hospital for another week. She was then transported to Orange County to Healthbridge Children’s Hospital for rehabilitation. Ashlie spent another 4-weeks away from home doing physical and occupational therapy 7-days a week. She was tired, her body hurt, her body would not cooperate at times, and we had lots of tears. After spending her 13th birthday in the hospital we decided it was time to go home and start our new lives.
Once at home Ashlie began physical and occupational therapy at home with an in-home health service. We tried to keep life as normal as possible for her. She started going back to dance class immediately, although participation was limited. She went to our local hospital for physical therapy.
After 6-months the therapists said there was not much more they could do for her and she was as good as she was going to get. That was not the answer I wanted to hear. She was only 13-years-old.
I began making phone calls and from there carried out more research. We were told to get her into Pilates with an instructor who had a dance background. We did just that and things started to fall into place.
Although some things fell into place, we noticed that Ashlie’s health began to change also. She was unable to keep foods down. Anytime she ate, she became very ill and everything came out one way or another. We noticed that she would have dizzy spells and pass out. She would have severe nerve pain at times, to the point that she could not be touched by anyone anywhere on her body. She said it felt as if her skin was being pulled from her body again. I have watched her go in and out of consciousness and struggle to breathe. She now has a rapid standing/sitting heart rate.
We have taken Ashlie to many different doctors and specialists. At one point they almost did heart surgery on her to try and stop her from passing out. She has been hooked up to heart monitors for 30 days and at the same time as this was happening, trying to continue to dance.
She has been seen in different emergency rooms over the last 4 years only to be told time and time again, that there is nothing wrong with her and that it is all in her head.