Hi, I posted here a few months ago when my mother was first diagnosed with MG. She is 87 and had MG crisis with breathing in late May. She was admitted to ICU and intubated, then received Plasmapheresis. Then in early June received IVIG. They then did a a trach. She spent 5 weeks in ICU and now 4 weeks in an LTAC. She is on Mestinon and Prednisone (tapered to 50 mg now). It had been 6 weeks since she received IVIG so we finally got another treatment for her a few days ago. She has been mostly bedridden or sitting in a chair for the 9 weeks. Been trying to wean off the vent for the last 5 weeks. One time she made it 10 days before she needed the vent again. She has been off the vent 3 days now and we are hoping this time it works. She does still have the feeding tube from 9 weeks ago in the ICU. Hoping that is reversed soon.

In your experiences are there other strategies or medicines we should consider to get to the point of reversing the trach? We were told that the plasma and IVIG usually does the trick, but not yet for us. How long have others been on the vent before they got to the point of a trach reversal? We are kind of stuck because don't know how much longer she can stay at the LTAC and there are really no nursing centers with vent units in the area. And she is probably still not ready for a PT Rehab facility. Hearing others experiences would be helpful.

Thank much.

Rob

First of all, I'm so sorry to hear about all that your mother has been going through! This is a tough question. If she needs a ventilator, that's an essential thing. I hope she starts regaining strength, and won't need that extra help with breathing for much longer.

Meanwhile, has her medical team mentioned non-invasive ventilation? If she is making improvement, I wonder if that would be an option for her. I am not a medical professional, but I know sometimes I know non-invasive ventilators are used as an alternative treatment in hospitals. I have used them when I am having trouble breathing with my myasthenia when I have been hospitalized, although I think my problems were not as severe as your mother's. Non-invasive ventilators are used in hospitals, and there are also units designed for home use. I have one here. It is like a fancy BiPAP machine. I use it at night, and also during the day when I am having a lot of trouble breathing. You could ask your mother's pulmonologist about it.

Best wishes to you and your mom!

Take care,
Erin

Erin, Thanks much for your response. I will look into that. The hope is that she can eventually have the trach reversed. Right now she is on the trach collar.

Best,

Rob