ronowen's Journal

 
    
26
Apr 2007
3:55 AM CST
   

Ron Owen

Miller Fisher Syndrome – Variant of

Guillain Barre Syndrome (GBS)

Week of April 16 (Tiff's birthday!)

Started off with a slight cold. Everyone in the family had been going through the same thing- sore throat, cough, congestion caused by East Texas weather.



Thursday, April 19

Did not sleep well. Woke up with excruciating back pain.

Friday, April 20

Took him to the emergency room only to find out he had probably pulled a muscle from coughing. ER doctor told him he had bronchiolitis. Gave him Bactrim DS and pain meds for his back pain.

Saturday, April 21

Legs were extremely sore. Resembled a stick man walking. Worried because he was complaining of his hands being numb. His doctor was not on call, so I spoke with another dr. He wanted him to come back to the ER. Loaded Ron and made the familiar trip yet again. They decided he was having an allergic reaction from the antibiotic (Bactrim DS). Ron was complaining of having trouble sleeping – he told him to discontinue Bactrim and take an Ambien CR.

Saturday afternoon –

Symptoms are progressively getting worse. Beginning to have difficulty feeding himself, holding a cup or even walking. Kept thinking that something is just not right. Decided to call a family friend that is a physician who told me to bring him up to the hospital AGAIN!! After various tests performed and several phone calls later, Ron was being transferred to ETMC for a diagnosis of Guillain Barre Syndrome. No one in the family had every heard of it and we did not know what we were in for.

Saturday night –

Got Ron situated in the neurology intermediate care room. Complaining of being in much pain and his fingers "locking up". Still had some general feeling in some portions of his body. Had a rough night sleeping.

Sunday, April 22 morning –

Things are progressively getting worse. He has not lost all ability to speak and cannot move any portion of his body. He is completely paralyzed, including his eyes. What is going on?? We decide it would be best to call Tiffany in Cozumel and see if she could get a flight home. Many prayers are beginning to be lifted as well as many phones are beginning to ring. Word is getting out that Ronnie is not doing well. Luckily Neal is in from college so he comes up to be with dad.

Sunday afternoon –

Noticed that he is having trouble breathing. They decide to put him on a CPAP. We were escorted out of the room and they wheeled Ron's bed into an ICU room several doors down. I guess that his neurologist and pulmonologist were right – he would get worse before better. BUT, we were just simply not prepared for it. We were now told the rules – only 3 visitors at a time and only during certain times. We went to see him in his room and they had decided not to put him on a CPAP, but the ventilator. They told us they would be giving him morphine and just wanted him to relax as much as possible.

Sunday night –

Tiffany arrives home from Cozumel. Many sweet friends call and stop by the hospital.

Monday, April 23–

Still not much change – still on ventilator and not able to move any part of his body. The nurses and care received could not be any better.

Tuesday, April 24–

Making some progress!! Ron can now communicate by raising his eye brows. This was much needed for both of us. 1 blink means yes, 2 blinks mean no, and 3 blinks means I LOVE YOU!

Wednesday, April 25–

Walked in his room with the country music turned up. Didn't know if the Travis Tritt was calming his nerves and he made sure to raise two eye browns (NO). Did not know if he wanted to listen to the news (NO). He just wanted it turned off. Asked him several questions – he said he was farely comfortable. Tiffany noticed his blood pressure and heart beat fluctuating – that is all part of the syndrome. April asked him if he had been thinking a lot and he raised one eye brow. She then asked him if he had been meeting with God and he raised one eyebrow. Throughout the whole visiting time, he made sure to raise his eye brows three times and we made sure to let him know as well how much he is deeply loved and supported.

11 comment(s) - 09:10 AM - 07/09/2007
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  • Username: ronowen
  • Gender / Age: Male, 69
  • Location: USA - Texas
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    About Me: We want to start out by saying thank you very much for all the phone calls, prayers, and support. We will be updating this website periodically (especially when there is new information). You can leave a comment by logging on (it is free) and we will be glad to print them and read them off to Ron when we visit. Thanks again for everything. We are truly blessed to have such wonderful friends in our lives!