Had to get up early this morning to get some pedia...
Today the Social Worker where my son was staying to recover from being intubated in the ICU for 9 days recently released my son to his biological mother as his caregiver and her boyfriend. By doing this it was very helpful because most people have no idea what they are doing with Myasthenia Gravis Symptoms because it is so very rare. So, it is easy to die of it in most hospitals and recovery facilities because no one knows about it.
So, the main problem I can see from my layman's perspective is that without certain medicines like Mestinon often the patient cannot swallow and if this medication is not given soon enough and the patient falls asleep they also stop breathing.
Because of this the people at this or most recover facilities would not be able to keep my son alive.
So, the Social Worker got this and released him to his mother's care so he wasn't suffering every 4 hours from not being given the amount of medicine he needed to stay alive there regularly.
So now, his mother who has been caring for him since about July 4th has much more knowledge of Myasthenia Gravis partly because she was the one who actually diagnosed what was wrong with him in the first place.
Originally, 3 years ago we thought it was just Bell's Palsy but that isn't what it was it just presented itself initially after he got it from Covid at that time.
Since then he has almost died many many times from almost choking on his medicine when it came too late so he couldn't swallow it or from going unconscious and barely being able to be revived. So, hopefully his biological mother and his neurologist will be able to prevent his death until he gets his next VyvGart Treatment which could save his life because it has saved the life of many Myasthenia Gravis patients so far.
By God's Grace
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