Today is day two and I need to be tested for Guillain Barre Syndrome as I know this is what I have and I need treatment for GBS right away. I can’t help but sit there saying to myself what are the doctors waiting for please test me for it.
I just woke up not long ago and I didn’t get much sleep, too much on my mind and who can sleep in the hospital anyways. It was around 8am and I had to go to the washroom so I tried standing up out of bed but when I tried I quickly sat back down. I tried again and to my surprise I had lost my legs and I quickly fell to the ground. I collapsed to the floor, I went down like a slinky. I’m now laying on the hospital floor embarrassed as to what just happened. It took 5 nurses and a security guard to place me on the transfer board and put me back in bed. I’m now laying in bed knowing everything is getting worse with my health.
What is wrong with me? Is this GBS? I need answers.
The doctor I was admitted under followed up with me this morning. She asked me the routine questions and learned about what had just happened prior with me falling on the floor. She seen my mobility was getting worse. She then informs me that a neurologist was coming in to see me to try and figure out what’s going on with me. I was happy to be able to speak to someone else. Hopefully I’ll be able to get some answers.
Guillain Barre Syndrome Is Paralyzing Me In Front Of My Own Eyes
Now I am unable to walk, now confined to bed and now I can’t even walk to the washroom anymore. I lay here unable to move and now I have to use a portable urinal to go pee now. I can’t even hold it myself and now need help for everything I do. Everything was fine a few days ago and now this is what I’m dealing with. I can’t believe this. Doesn’t even seem real. It’s like a bad dream but this is no dream at all, this is happening. I’m slowly becoming paralyzed in front of my own eyes.
It was around noon time and my parents came in to visit me. At the same time my lunch had just arrived. It was an egg sandwich and I couldn’t even open it up. My mother opened up the sandwich for me. I tried eating but I couldn’t even pick up the sandwich and bring it to my mouth. I had lost my hands and my arms now. My mother had to feed me. I’m now an adult baby unable to take care of myself now. Things continue to get worse but again I am not receiving any treatment as I slowly watch my body deteriorate more and more. All that’s going through my mind at this time is I need answers now, treatment now, i’m getting worse and worse. Can it get much worse then this? I’m about to find out.
The neurologist came into see me, asked me questions, tested my reflexes, and did an overall physical examination. During our conversation I brought up Guillain Barre Syndrome with him as a strongly told him this is what I have. At this point I wanted a lumbar puncture done which is the test they use for Guillain Barre Syndrome or GBS. You can just tell by our conversation that he thought it was the same thing as me but doctors don’t want you to worry and are very reluctant to tell you what they’re thinking. He proceeded to tell me he wanted to do a few more tests first before going to a lumbar puncture test for GBS.
I went for more tests and more MRI. When you can’t move and you feel trapped and confined in your own body going in the MRI machine is no fun. Towards the end after having numerous ones I had some anxiety having to go in there more. I can’t tell you how many I had, first they wanted the brain done, then upper chest neck and complete body. I could not stand going in that machine anymore. After my tests the neurologist came back and told me he is proceeding with the lumbar puncture test for Guillain Barre Syndrome. Finally….. I’m going to find out for sure what I have. Two nurses came in and sat me up leaning me forward hunched over and held me still while the neurologist stuck a needle in my back and drew some spinal fluid to perform the test.
With my health deteriorating more and more they brought me over to the Surgical ICU Department for more observation while they waited for the Guillain Barre test to come back. I’ve never seen so many nurses around me. The respiratory therapist was there monitoring my breathing. My breathing was deteriorating as well. I was starting to get tired just talking and shortness of breath. The lumbar puncture test finally came back and it was positive for Guillain Barre Syndrome. The doctor spoke with myself, Cheyenne and our oldest daughter Moriya and informed us that their major concern now is that my breathing doesn’t become compromised and that they will be keeping me under close observation and should my breathing continue to deteriorate they will have to intervene and intubate me and place me on a mechanical ventilator.
They continued to monitor my breathing and had me do some blow tests on a regular basis. Within minutes my breathing strength went from 15 to 6, oxygen levels went down drastically. At that point after looking at the nurses faces as well as the doctor and respiratory therapist I knew how serious this was. They wouldn’t wait 10 minutes, I had to say what I had to say quickly to Cheyenne and the kids. Out of everything I was going through that was the hardest part. When you see the scared look on peoples faces is never a good feeling. I didn’t know what was gonna happen next, I didn’t know how things were going to turn out. Trying to find your words to say to people in a few minutes is tough. Will I be OK, what were my last words I was going to say to her and the kids? I had tons of things going through my mind but so little time say what I wanted to say. I have been strong my whole life, I was trying to be strong for them by saying everything is going to be OK. The truth was I didn’t think I was going to make it. This is something I haven’t said until now.
After having a moment alone with them I made time to quickly call my parents to inform them what was about to happen. They had just gotten home from hospital and received my call and informed them I’m being put in an induced coma by Dr Bourgeois as my oxygen levels had dropped drastically. They said they were coming back right away.
I said goodbye to Cheyenne and Moriya and I was quickly put in an induced coma. I was hoping I would see my family and kids again.
My parents rushed to the hospital breaking many traffic rules on the way but by the time they arrived I was already put into a coma. Now everyone waits for the unknown and whether or not I’ll be okay.