Guillain-Barre Syndrome can kiss my ass

I’m still catching you up to the story as it is now.

The first full week that John was at the Shepherd Center three hours of therapy were planned each day. As I mentioned before, he is getting speech, occupational, and physical therapy. Later on they would add recreational therapy and outings in the community to start practicing using whatever equipment he needs to.

The first full week, I had a couple of things I had to get done too. First, I had an appointment to work with their Social Security expert who would help me complete all the paperwork for John’s Social Security disability insurance. You have to be disabled at least six months with an expectation that you will be disabled for at least 12 months before you’re eligible. A very nice guy by the name of Robert helped me gather all the information that was needed and then he submitted it all online. He woud also take care of all of the medical records that Social Security will need to determine if John is eligible for Social Security disability insurance.

The next thing I needed to do was go to a special Shepherd Center family orientation. That was to give me an opportunity to understand how things worked, to learn what resources were in place for family. A very nice lady by the name of Sherry led that and there were three other ladies in there with me. One of them was there with her husband who had suffered some sort of accident, and the other two ladies were there with their sons, one was 18 and the other was 20. Both of them had extensive spinal injuries as well. Overall it was an excellent class and I learned a lot.

While I was in my classes, John was working with his therapists. However by Wednesday morning it was apparent that John was really really tired. The rehab doctor explained it to me this way. What we’re really fighting at this point is not Guillain-Barré so much but exhaustion. It takes energy to move his head, it takes energy to shrug shrug his shoulders, it takes energy to sit up in the power chair, it takes energy to do the therapy, it takes energy to just to breathe, and it’s all energy that he does not have.

So that afternoon, John started getting very frantic, mouthing the words to me that he needed to sit up. All of a sudden his nurse who was in the room is getting a phone call, “yes I’m in the room with him,” the nurse said. And then, all of a sudden about two dozen people flew into the room. They gently pushed me aside. They started talking to John, asking him questions, suctioning his tracheostomy, and telling him they were here to help.

I finally understood why they were there. His heart rate had dropped. The monitor that he was wearing was being evaluated in the ICU and they saw his heart rate drop. A nurse pulled me aside and told me this was very common. That he either had a small mucus plug in his lungs due to all of the secretions or he was just exhausted. Either way, they would be putting them back on the ventilator and giving him a chance to rest.

The next day, the very nice pulmonologist, who is his primary care doctor here at the center, explained to me that this is very common with Guillain-Barré patients. They would begin work immediately to start weaning John off the ventilator again.

How can I explain what it is like to see your loved one being worked on like that? It was the most terrifying thing I have ever seen and they didn’t even have to use the paddles of the PR or anything. It was just the tone of their voice, not panicked but calm and reassuring, the same voice my mother used when our dog got hit by a bat while me and some other kids played softball in the backyard many years ago. It scared me too because in that moment that I was trying to help him I didn’t know that he was in danger. How could I possibly expect myself to be trusted to understand it in the future? I felt like I failed John that day.

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