Surgery Scheduled for Tomorrow!

After some scheduling changes and challenges at the hospital, Michael is scheduled to have his procedure to put the feeding tube in tomorrow morning.  We have to be at the hospital bright and early...  6:30am.  Yuck!  

In the mean time, we are still struggling with things coming together.  The dietician was supposed to call at 10am yesterday to put together his formula and feeding plan.  She never called.  I called GI twice and didn't get calls back.  I called GI again this morning only to find out the girl who was helping us is out sick and she made no notes, so no one knows what to do or which dietician she had scheduled to call us.  There are just a LOT of loose ends!!  A lot has to happen between today and 6:30am tomorrow...  dietician needs to call and put together a plan so that the doctor can write the orders and everything to be here before we come home tomorrow!  I'm a control freak... it's a pitfall of mine...  and this mess is driving me nuts because there is nothing I can do!

We're also worried about the financial end.  There is lots of red tape with Medicare and enteral feedings.  Only certain diagnoses are covered.  With Michael...  they don't have a definitive diagnosis.  Some doctors think it's the CTE, but CTE can't be legally diagnosed when someone is alive.  Others think it's an autonomic issue, but no one can confirm.  For now, he is diagnosed with Inefficient Esophageal Motility and Oral Pharyngeal Dysphagia.  The IEM isn't a "covered" diagnosis for Medicare for the formula (it DOES get the surgery, pump, and supplies covered...  but not the formula).  Dysphagia is, but only if he is noted to be absolutely nothing by mouth.  Well...  that's not the case because he can have liquids and SOME soft foods.  

And Michael...  he is quiet and down this week.  Life is about to change...  in a huge way.  We are all just trying to muddle through until we figure it out and get into a new routine.  

Please join us in praying for all of this to be resolved...  for the dietician to get her act together and get a plan in place, for the doctor to get the orders written in time, for the procedure to go smoothly with little pain, for him to be able to come home tomorrow, and for insurance to cover what we need covered, and for the financial burden to be lifted through fundraiser donations so that we can focus on healing.  Any donations that are sent through this site are used for his medical expenses and are greatly appreciated!

If you have a few minutes, send Michael a card or a note to help lift his spirits.  He doesn't use Facebook anymore, but you can mail it to him the old fashioned way to

Michael Lyons
15523 W Central Street
Surprise AZ  85374

We could not be getting through this all without the love, prayers, and financial support of all of you!!! 

A heartfelt...  sincere...  THANK YOU!