,My Dad was diagnosed with Myasthenia Gravis in 1995 following the removal of a thymoma. He has maintained a relatively normal lifestyle with the help of IVIG treatments (used to be more often than now), mestinon and a few plasmapheresis treatments over the years. He is able to drive, get around the house without my Moms help and go places. However, he does keep a wheelchair in the car and uses it often as a walker and then seated if out for longer periods, needs our assistance when getting up from low seated positions. He has trouble sleeping or staying asleep. He has been getting out of the house less and less over the last year.

Beginning several weeks ago, he started feeling sick. He wasn’t able to sleep at all. Had trouble catching his breath and was cold. My Dad and I talk every day and he started to fall asleep on the phone with me; very unusual for him. When I spoke with him on Valentine’s Day morning, he sounded almost drunk. I called his Neurologist and they said we should take him to the Emergency Room ASAP. Unfortunately, the neurologist my Dad has been seeing for over 20 years had a medical emergency of his own and is out until May.

Now, after almost 4 weeks in the ICU (2 weeks at the hospital ICU and 2 weeks at a long term ICU), we know the start of the problem was MRSA (staph) infection and Pneumonia. He has been intubated since February 15th; first in his mouth, now though a trach so he is unable to talk. He is now on a setting on the vent called 'SIMV', next step we are told will be CPAP. He is also receiving kidney dialysis (never received before this time of being sick) today for the 6th time. He usually takes 30mg of Mestinon every 4 hours of so at home. Because they think he is in crisis, the Neurologist we were assigned, raised his dosage of Mestinon to 60mg. Dad was very, very weak and could not move his arms at all up until about a week ago. Now, he is able to slowly move his arms, turn his head, and squeeze our hands. He started shaking quite a bit about 4 days ago and we thought maybe he is having a overdose of mestinon. The neurologist lowered the dosage yesterday to 30mg every 6 hours.

He also has a blood clot in his right leg. They have to take him to another hospital to put in a filter tomorrow.

My Mom, brother, sister and I as well as the rest of our family are very concerned. Also, because it’s almost impossible to communicate with him, we just don’t know how things are going. We don’t know these doctors and although we feel like they are doing a good job for the most part, they don’t even really know what is going on.

I am looking for any advice or to hear from someone that has been in a similar situation.

Thank you so much.