I know I have an audience out there who follows my blog. I don’t always get feedback from you, but I thought I should let you know what’s happening with my mom.
Well, first of all, it wasn’t a stroke. The doctors wouldn’t believe the MRI and CT scans which came back normalÂ – her symptoms kept telling them stroke. Unfortunately, she kept getting more symptoms, and they were getting worse. So after another week of going back and forth to the emergency room at Sanford, they hospitalized Mom again.
Now she’s in the Critical Care unit, getting a few more tests after finally getting a real diagnosis of myasthenia gravis. Myasthenia gravis (MG) is a neuromuscular condition — a little like ALS or Lou Gehrig’s disease. The good news about this is that MG is treatable and can go into remission. A person can live with MG, whileÂ ALS is degenerative and a person generally dies from complications as it progresses.
Mom actually called me this morning from her hospital room. That was so nice — to hear her voice, reassuring me that she’s responding to the medication. My sister was there already. (She’s a much earlier riser than I!) Lisa Lu was the one who insisted that Mom be tested for other things besides a stroke. (Thank goodness for that assertiveness gene!)
There are a couple of other treatments that Mom can consider. Sometimes MG is treated with the removal of the thymus gland; sometimes plasmapharesis is the answer. (It’s like dialysis, and a more agressive treatment.) Mom decided to try the medications first, see how that works, and save those other options as her ace in the hole. No need to swat a mosquito with an elephant gun.
I was a little miffed that the doctors were unwilling to believe the tests they’d approved. All the tests and scans came back clear, so why didn’t THEY decide to keep looking? I went online and started my own diagnosis dig while Lisa Lu sat with Mom in the ER and told Mom’s symptom story numerous times.
Â HighGuy had a co-worker who had multiple sclerosis, and I knew that sometimes sight is affected, so I did some research there.Â HighGuy also had an aunt who died of ALS, so I went there next. That’s when I found the information on MG. I probably came up withÂ the diagnosisÂ about the same time they were administering the Tensilon test on Mom.
The Tensilon test was the clincher. An IV medication is administered, and if the patient’s symptoms subside, it’s MG. Mom noticed a marked change; her breathingÂ and sight wereÂ immediately better. And the doctor was convinced as well. They prescribed the longer-acting medication; it came in pill form.
Oh, that’s good. A pill for a woman who’s having trouble swallowing. They ground it up and put it in applesauce, and Mom made it work. (It reminded me of when my young son was taking oral medication for asthma — we were rather creative when it came to grinding up his pill and putting it in different foods.) But really, wouldn’t a good pharmacist know better?
I’m still confident that Mom is getting good care on the Critical Care unit — the nurse-patient ratio is about two to one, and sometimes three to one. I must have arrived when they were having a shift change, because up and down the hallway, there were two and three people in scrubs in conference at each door. That’s reassuring.
And we’ve even called in the third string on the team. My sister from Down South is flying in, and she’ll take on some of the errands and puppy patrol. Mom’s dog, The Condo Dog, who I’ve renamed Velcro Dog, is like her caretaker — a little stubborn and rather independent. That means she doesn’t always come when you call.
I heardÂ Velcro barking this morning from Lisa Lu’s unit upstairs, so I went up and let her out. She went flying down the stairs and stood in front of her own door. I insisted she go outside and try to go potty, and she complied. I thought I might be in for a chase around the back yard, but she came in when I opened the door.
Velcro came barreling in, and went into her own unit just fine. I’d turned on the light, the TV, and opened the shade so she could see outside from her perch on the back of the couch. Yes, I know, Velcro’s a dog. But this is how Mom leaves her when Mom goes to the library or the grocery store.
I’m hoping Mom will be back home soon, although the doctorsÂ haven’t started talking about that yet. We want to make sure she’s responding well to the medication, and won’t need any other major treatment. And although it’s been a long and tiresome week for Mom, we’re sure she’s going to get plenty of rest when she comes home.