Quick update, I will give more details next week. A lot has been going on with Michael since July. The catheter
that delivers baclofen from his pump to the intrathecal space of his spinal cord, began leaking. Muscle spasms
began. It took almost 2 months to convince the doctors that it was a baclofen problem.
September 9th, the pump and catheter were replaced.
September 24th, he was in the ICU for baclofen withdrawal. This is a life-threating condition. Xrays showed that
the catheter was no longer in his spinal cord.
September 27th, surgery was performed to repair the cath.
October 6th, another surgery to repair the cath.
Three botched attempts by the same surgeon has left him with a non-functioning pump. She said there was
nothing else she could do and dropped the case. No other surgeon in the area will do the surgery. Tried outside
of the area. Shot down by Mayo Clinic and University of Alabama Birmingham. Emory has a 90 day policy,
won't touch anyone until 90 days after surgery.
Michael gets meds every 4 hours to try to make up for the non-functioning pump. He suffers from muscle and
bladder spasms, spasticity, agitation and pain. Understand that he has been going through this since July 2010.
Brounght him to Saint Joseph's Children's Hospital in Tampa, (6.5 hours away), a few weeks ago. They did more
in 3 hours than we could get accomplished here in 4 months. They will be doing his surgery next week. Watch
this video, these are Michael's saviors. Teresa Dean, the patient navigator, touched this old man's heart with her
caring and compassion. She helped us so much, and as we were leaving, she asked if there was anything else she
could do for us. I couldn't say a word, I just hugged her.
I get a max of four hours of sleep a night due to Michael's med schedule and condition, so I'm a little tired these
days. Rest assured, when Michael gets fixed and I get a little sleep, I will hold people accountable for the hell they
have put us through. The list grows. More to come......
Five years ago today, Michael's lifeless body was pulled from the Gulf of Mexico. Five years of the deepest,
darkest pain imaginable. I have tried several times to write this update, but I can't seem to get it right. I will try
again tomorrow. Tonight, I will spend time with Michael and do what I have done for the past 19 years; love him
with all my heart.
You can hear a very touching song if you turn your sound up.