The beginning...

Hard to believe that this whole crazy life altering syndrome only presented itself one week ago! So much has happened this week.In this post, I (Flora) will attempt to catch everyone up to speed on events to this point and then we will update daily as he continues to improve. We look forward to the day that Dad can read this blog on his own and marvel, along with us, at all of the ways provision came at just the right moment. I will try to record the good, bad, and the ugly so that Dad already has an outline ready when he decides to write his book.

  Friday March 7th- Mom and Dad sign closing papers on their new condo and complete the sale of their Highland Ave house.

  Saturday March 8th- Before going to bed, Dad notices a bit of double vision. Attributing it to his glasses, he took them off and went to bed. In the night, he got the "Steve, you are snoring!" elbow from mom and got up. He realized that in addition to the double vision, he now also had right hand weakness. Thinking that he was experiencing a minor stroke, they were able to wake up Tim (in town to help with Moving day on Monday) and head off to St Elizabeth South ER.

  Sunday March 9th- Frustrated that he didn't arrive in time to receive clot busting drugs- TPA (THANKFULLY!) we were now in wait and see mode. CT's and MRI's came back negative and the Drs were unable to find the supposed clot. And still the weakness progressed- now moving to both arms- causing confusion about a bilateral stroke. Becky quickly arrived at the hospital from Columbus.

  Monday March 10th- When his eye and mouth began to droop, his speech began to slur, and he lost the ability to move his legs- Dr's keyed into the fact that he had had GI upset for the week prior and began to lean towards a Guillain- Barre Syndrome diagnosis. A lumbar puncture was performed (showed high normal proteins) and he was transfered to ICU in anticipation of future airway management (ventilator). At this point, Dad was in constant pain in his arms due to the alteration in nerve sensation. He failed a swallow eval so they placed an NG tube for medication administration. He also received the first of 5 planned doses of IVIG- high dose immunoglubulins that they were hopeful would stop the progression and prevent nerve damage.

 Tim and Becky rallied the troops and completed the move from house to condo as planned. They were rockstars! Of course, we couldn't help but rib dad about getting out of moving boxes. ;)

  Monday March 10th evening/overnight- Rather quickly, Dad lost his gag reflex, ability to cough, and general ability to transfer air. He was intubated around 8pm. He was fully aware of the situation and was able to tell me that he was ready for intubation because he was tired and felt like he was choking. For the rest of Monday night and Tuesday, he was pretty heavily sedated. They placed a PICC line for his IV medications and blood draws.

  Tuesday March 11th- Today they identified his GBS as a Miller-Fisher variant. Only about 1 in 100,000 people get GBS and only 5% of those patients get this variant. We had high hopes that the IVIG therapy would bring improvement. He received his 2nd dose. The plan from all 3 Dr's was "Stay the course". While happy with his care, we began to catch whiffs that they didn't see this condition much at this hospital. Due to the general weakness and intubation, Dad was only able to communicate through shaking his head no and blinking for yes. We played many games of 20 questions "Are you in pain?" "Do you want me to move your legs?" etc and he was still able to direct his care.

  Wednesday March 12th- We had a chance to speak with a high level neurologist at University of Cincinnati- Dr Dawn Kleindorfer. Incidentally, she was the one who had trained the neurologist that was caring for him at St E's, Dr John Webb. Her advice was that he very definitely needed to be transferred to a NEURO ICU at UC. She confirmed that the treatment might initially look the same, but that they were much better equipped to prevent any possible complications and address any that might arise.

Tim and I were sobered at the mountain that we would have to climb- getting it cleared with his drs, insurance approval, logistics of transport, finding a receiving Dr at UC, and even just hoping that they might have a bed available on the unit. We asked many for prayer and were reminded that "God owns all the beds at a thousand hospitals" and within a few hours all obstacles were cleared. The Drs came in early to speak with us, agreed with our request, handled the details and insurance issues with guidance from Dr Kleindorfer, and a patient was just getting moved out of the NEURO unit- we only had to wait for the bed to be cleaned. ;)

 Dad was transfered to University Hospital ICU around 6pm. When we arrived, he was already settled in and they had a note on the door saying "Pt alert. Can speak using eyebrows" At this point, Dad was only able to communicate using his right eyebrow- but they quickly developed a system- 2 eyebrow lifts means yes and 1 eyebrow lift means no. He was able to answer all of their questions and they were impressed by his cognitive awareness.

  Thursday March 13th- When we arrived at the hospital, there were many people attending to him and addressing many different aspects of his care- the Resp Therapists switched him to a heated humidified vent, an Ultrasound tech scanned his legs for blood clots (just to check), they transfered him to an automatic turn bed to protect his skin and prevent pneumonia and also added percussion to keep his lungs clear from gunk, Physical Therapy came in to consult on splints and foot drop boots, and through it all his nurse made sure that everyone spoke to him and informed him what they were doing. He indicated his understanding through his eyebrow and they also watched his vitals for any changes that could indicate stress or pain.

 As his family we wanted to make sure that they knew just how special their patient was - and that although he looks like "the patient in room 17"- he is really much much more.

 Tim placed a sign over his bed saying:
 My name is STEVE
~Husband to Nancy
~Father to Tim and Becky
 ~Grampa to 6 cute kids
~Retired Material Handling Engineer
 ~Lover of model trains
~Friend to many

 Becky brought in many pictures and made a collage to remind all staff that this is our precious family member.

 Through all of the medical drama, many many family members, Lakeside friends and life long friends assisted with helping with the move, taking care of Charlie, providing meals, taking care of our kids so that we were free to be at the hospital and prayer support. Your love and care have been, in Mom Parsley's words, "A river of God's love that has carried us along" Many more thank you's to be said but for now I'm going to complete this chapter and jump to daily updates.