First blog for Kathy March

It took a bit of time before I could make this blog thing happen. Hopefully this will be a good way to update everyone on Kathy's condition. To get everyone up to speed this will be a fairly long post; Friday morning March 26, 2010 Kathy woke up with pins and needles feeling in her toes. We brushed this off as an odd occurrence and both went to work. Of course this odd occurrence began to progress and eventually pins and needles in the toes led to pins and needles in the fingers and an odd blistering on Kathy's knuckles accompanied by blotchy skin on her legs. Her school nurse gave her an antihistamine and the blotchy blistery problem seemed to go away. We had ate out the night before and Kathy assumed some type of food poisoning. She immediately called me and told me not to eat the Pad Thai leftovers that she had packed in my lunch (yes, she packs my lunch).

By this time I am certain that Kathy's stress level was sky high, this is based on the fact that I found extensive hour by hour notes on what she was experiencing that friday. When I finally saw Kathy on friday evening she had just returned from the hospital with her mom. The hospital sent her home because the symptoms where odd and not that apparent yet. She was instructed to return immediately if the symptoms got worse. By 9:00 pm there was an obvious hitch in her gate and the pins and needles were still there.

By 6:00am on Saturday March 27 the syndrome had progressed substantially. Kathy awoke unable to functionally walk on her own and suffering from double vision. She was absolutely certain it was time to return to the hospital. We both knew that something was very wrong. Kathy was admitted to the hospital and in her room by noon time. Nothing made any sense and everything continued to get worse. Her heart rate was elevated, she was spiking a fever, gross motor control continued to decline to the point where I was required to roll her onto her side so she could be comfortable. By 2:00am Sunday morning Kathy told me she was no longer able to lift her head off the pillow and the really scary part was her slow loss of respiratory function. The nurses assigned to Kathy's care were very worried and immediately contacted both Kathy's neurologist, and the intensivist on duty that evening. All agreed that she needed to be immediately moved to the Critical Care Unit and within a half hour we were on the other side of the hospital.

This new location was like the Hilton compared to the room that we were just in. However, the events that followed the move and subsequently closed out the remainder of the weekend were the most frightening of my life. Kathy's motor control continued to decline, fever was worse, and her heart rate continued to be elevated. Once we had moved to the CCU the respiratory therapist was in the room every couple of hours to test Kathy's breathing. This was consistent and strong for quite a long time. Sunday brought a brain MRI and more of the same symptoms. Sunday night was the worst yet with absolutely no relief for the pain Kathy was experiencing. A drug called Adavan was administered to help Kathy sleep and hopefully reduce her extremely elevated heart rate. At this time her heart rate was consistently 150 bpm. The Adavan did absolutely nothing other than freak her out even more and elevate her heart rate. Most of the remainder of Sunday evening and Monday morning are a blur, there was a spinal tap, thoracic and lumbar MRI, more worrying and crying. The doctors confirmed the GBS diagnosis via elevated proteins in the CSF. They immediately performed the first IV IG treatment. Kathy called this the
"magic pill" and immediately had a positive response leading us to believe that this was on its way to being over. However, just as soon as she was feeling a bit better she sustained a massive drop in respiratory function. Based on this, the doctors recommended that Kathy be proactively intubated before she had a respiratory emergency. I discussed this with Kathy and then consented with the doctors. This was the last time I spoke with my wife.

The remainder of this week has been ups and downs with IV IG treatments, fever, pneumonia, tracheostomy, elevated blood pressure, pain, morphine drip, reduced oxygen saturation, feeding line, Digoxin for HR, and the latest is a Nitro drip. As of today Kathy is stable, her heart rate is down from where it was and she is moving her shoulders, head and neck. She has a special bed to prevent bed sores and a vibrating vest to help move mucus and fluids out of her lungs. The GBS appears to have peaked and now the doctors and nurses need to sustain and care for all of her body's systems. The rest is a waiting game that could take weeks. The syndrome usually starts in your feet and moves its way up your legs to your arms, chest and eventually the head. Interestingly, it is supposed to leave the same way.

Interesting and helpful websites that have provided crash course reading and information for me over the last week:
GBS / CIDP Foundation International - www.gbs-cidp.org
Mayo Clinic - http://www.mayoclinic.com/health/guillain-barre-syndrome/DS00413

If you are really interested pickup the book "No Laughing Matter" by Joseph Heller & Speed Vogel. I have just started it on the recommendation of Kathy's neurologist.