Why Can't Things Stay the Same?

M asked me that the question yesterday when I explained how my breathing is changing, and there may be some changes in machines I need, or tubes I'll have to use.  I had no answer for her. Before I could explain that changes can be good, she had bounded off the bed and out of the room after wiping a few quiet tears from her eyes.  She tries so hard to be strong for me- it kills me.

I started this blog for no real reason last year but think this is a good time to resurrect it for now.  John is too busy and tired to answer many questions, and they don't always make sense when he tries to, shhh.  He is on top of things, but exhausted.

I will use this to update for family and friends about what decisions I'm facing and how we are dealing with it.

Changes have occurred.  I actually got a diagnosis- Limb Girdle Muscular Dystrophy Type2i, LGMD2i for short.  It's really only half of the diagnosis since this disease requires a copy from each parent and I only have one.  The super-smart scientists at Nationwide Children's (I think?) are still busy sequencing the rest of my DNA.  My doctor assures me they will finish the project.

A big change has been my weight.  Eating has become difficult and tiring.  I am aspirating too much and not getting enough nutrition.  Recently, I have put a few pounds back on with smoothies, shakes, ensure, and protein powder.  A feeding tube is in the near future though.  I hope I will be able to enjoy being around family meals again.  They have become too stressful.

Perhaps the scariest change is regarding my breathing,  I have been pretty stable for many years.  When my diaphragm quit moving, I used the Bi-Pap for years until I maxed its settings out.  I moved to using the Volume Ventilator, which I still use non-invasively at night.  When I couldn't cough anymore, I started using a Cough-Assist Machine.  The Cough-Assist has saved me from pneumonia, hospitalizations, respiratory arrests many times, in my opinion.  Unfortunately, I had a recent bout of bronchitis that has flattened me.  I have not been off the vent for more than a half hour a day, at most, since July 7.  More decisions to make.

I've had a couple appointments, and I have a few coming up.  I'll update those another time.

I am feeling better, just exhausted and sore.  And really mad that I have had to cancel some family fun trips.  We are not extravagant people, but I had some plans.  I am so disappointed I have to miss a family event, and not take my deserving girl on a couple weekend trips.  So, I will wait until we can go.

This crazy life- still hanging on.