EMG results (nerve ending test): Michele has a condition called myopathy or CIMs. This is the result of a few things, the amount of time in the coma and the intense muscle relaxers she was on. See info from the internet below. This is what is causing her not to move, which the prognosis is good, but she will need 2 – 5 months of intense therapy. This therapy will start here, and continue in Colorado.
What is Myopathy?
Myopathy is a general term referring to any disease of muscles. Myopathies can be acquired or inherited, and can occur at birth or later in life. The muscular dystrophies are examples of myopathies. General symptoms of myopathy include weakness of limbs, usually proximal (located close to the center of the body). Some individuals report that their myopathy emerges during exercise. In some cases, the symptoms diminish as exercise increases. Depending upon the type of myopathy, one muscle group may be more affected than another. In some instances, individuals have myopathy but report no symptoms. In the inherited myopathies, some family members may be unaffected, while other family members may have a range of symptoms. Myopathy can result from endocrine disorders, metabolic disorders, infection or inflammation of the muscle, certain drugs, and mutations in genes.
Is there any treatment?
Treatments for myopathy vary depending on the type. Supportive and symptomatic treatment may be the only treatment available or necessary in some cases. Treatment for other forms may include drug therapy, such as immunosuppressives, physical therapy, bracing, and surgery.
What is the prognosis?
Some individuals have a normal life span and little or no disability.
Lumbar puncture fluid results: The fluid removed from her spine is clear. This procedure seemed to help Michele in her movements, the swelling and her alertness. She may not need the shunt operation, and may just receive a series of lumbar punctures. This procedure also seemed to help her skull to go back to a normal position and over time we will decide if anything needs to be done to put it back into place for cosmetic purposes.
The heart test relating to the right atrial vegetation: These results are not back yet. This issue is typically treated with blood thinners, which we do not want to use, so an alternate treatment is being looked into.
Brucellosis: Michele definitely has brucellosis, although we may never know exactly where it came from. She is being treated for it by antibiotics. The kids were all tested at home, and they do not have it.
The overall prognosis is very positive and very optimistic. Her doctor is quite sure that Michele will have full movement back within 2 – 5 months of intense physical therapy.
An area of concern is her speech, as the latest scan shows blood near this part of her brain. Once the respirator is removed, and the trach is capped, it will take up to 3 weeks to determine her ability to speak.
Although we’ve all learned through this entire ordeal that we can’t put an exact date on anything, and roll with the day to day recovery. We do however expect Michele to be moved to a regular room within 3 - 5 days. This will happen when she is off the respirator, which she is working on right now. She was completely breathing on her own, off the respirator for 2 hours this afternoon. We also expect to leave Miami in 2 – 3 weeks, and are currently looking into the best physical and speech therapy options for her at home.
Although Michele is still in NSICU and in serious condition due to her infections, the doctor gave us great (and much needed) optimism. With Michele’s determination and strength she should be able to pull through this and be back to 100%.
Please keep those inspirational emails coming!
Love to all,
John
No comments:
Post a Comment