Quote:
Originally Posted by AnnieB3
Well, to be fair, doctors don't have a lot of time to talk about things. 
Have they even thought to culture the sputum he is coughing up, to make sure they are targeting the bacteria with the right antibiotic? MRSA is common in hospitals and that antibiotic (yes, that's the correct name) won't cover it. Make absolutely sure he never gets Ketek (telithromycin)!!! Quinolones can be bad too. What he is on is a combo-antibiotic.
They may not have more than Jevity, but I thought it might be worthwhile to find out. Those of use with autoimmune diseases can sometimes be more sensitive to things like inflammatory foods.
It's a double-edged sword, the sedating drugs and getting a good night's sleep versus no drugs, not getting enough sleep which can make MG worse too. Sleep is absolutely necessary for people with MG. Maybe they can give the smallest dose possible. Young people, older people and those of us who have illnesses like MG can be more sensitive to higher doses of meds. Just a thought.
Do the doctors know about those shaking episodes? I would ask them what it could be. Epilepsy? Drug effects? Not enough oxygen? There are so many reasons and I'm not a doctor, so talk to them about that.
I can't say whether trach surgery is a good or bad thing. I can tell you that anyone with MG who has surgery will often get worse. They give more drugs, like morphine, which can make MG so much worse. After I had morphine, I had moderately severe restrictive breathing. I know a trach helped my Dad (who didn't have MG) but it's such an individual thing. There's also an increased risk for ongoing infection with a trach. It requires lots of upkeep, which is one more stressor for the body.
There are a lot of great people here. Keep asking questions. I hope others like Teresa chime in. It's so difficult having a parent in such tough shape. And you want to make the best decisions but, like you said, doctors don't often feel the need to talk to the family about what they are doing. You really have to be an advocate for your Dad, which it sounds like you are, along with your half-sister. Hang in there. I hope you can all work as a team to help your Dad.
Annie |
I believe they did a culture on the stuff he was coughing up, that was the night he was admitted to the ICU. I don't know if that is how they determined to put him on the Zoysn or not. I will see if they can put him on Ketek, then again me saying that to them, they will probably laugh.
I know the sedative drip he is getting now, the white stuff, is a low dosage. It was enough to allow him to sleep throughout the night last night though which is good.
The shaking episodes were mentioned to the Dr. and the nurses which just shrug it off in to the I dunno category from what we have seen.
From what I have read there are positives and negatives to the Trach, but like you said the effect the surgery will have on him is unknown. Although could it be much worse than putting the vent down there once more if when they take it out it he still can't breathe on his own. I know when they put that down they have to sedate him pretty good. They also mentioned that it might not even go down a third time since the swelling in the throat.
Thanks again for all of your input!