One month ago today, Dad thought he was having a stroke. Instead, it turned out to be a rare auto-immune disorder called Guillain-Barre Syndrome that attacks the peripheral nervous system. He quickly became paralyzed and lost all of his reflexes - including his ability to cough, gag and protect his airway, so he was put on a ventilator. He can feel but not move. He has complete mental function but he cannot communicate except through jaw motions - up and down=yes, side to side=no.
He started his journey at St E South, was moved to Neuro ICU at UC for a few weeks, spent 24 hours at Drake rehab (at Christ hospital), had emergency surgery at Christ Hospital for a bleeding trach and is currently in SICU at Christ awaiting transfer back to the Drake unit. 4 different hospitals (8 different units) in 30 days!
He has received 4 doses of IVIG and 5 plasmapheresis treatments. He has had a trach, a PICC line, and a feeding tube placed. He has had pneumonia, a UTI and a blood clot. He has had multiple X-rays, CT scans, and bronchoscopies. He has had EKGs, EMGs, and surgeries. Whew!
Along the way we have met hundreds of health care professionals and hospital personnel. We have seen all the -ologists (hemat, neur, cardi, onc, pulm, radi, etc) Overall, we have been very impressed and totally appreciative of their expertise. (Except for that ridiculous ICU nurse who tried to flex her muscles - she called security and 5 cops [yes, 5!] showed up to throw me and Tim out of ICU - but ended up punching her own self in the face!! ;) How'd that work out for you, Ruthie?! You got busted and I have a blog. ;p)
He has been to the brink and is starting the long journey back. Doctors say that the nerve damage is extensive and could take close to a year to recover but they do believe he will recover. He has already started weaning from the ventilator. The plan is to just support him for as long as it takes for his nerves to regrow (at the rate of a millimeter a day). We are praying for complete restoration.
The learning curve has been steep but we are each gaining new skills and finding new sources of strength every day. Dad has been a trooper and continues to amaze us with his fortitude.
There. That's the cliff notes. You are now up to speed... (Are you exhausted now too?)
I just read through today's blog entries. All I can say is, "wow," what an inspiration. So thankful for the power of our mighty God. He is faithful!Hang in there, Steve, Nancy, Tim, Flora and all. Many blessings!
ReplyDeleteHi Family,
ReplyDeleteI don't read the blog daily, but when I come back to it I catch up until the last time I read. We are still praying for you guys daily!! You are all such an inspiration. God must be so pleased by his faithful servants.
We were once in need of great prayer and support, and our friends and family pulled us through in much the same way yours is.
I wanted to offer help with the dog if you need it. My daughter Noelle frequently has dogs here because of her dog boarding business, so we are used to "guests" over longer periods of time. (We are offering to do it as friends of friends, of course. No cost.) We are friends with J.J. and Chris and Flora and probably don't live super close (Westsiders) but I'm sure we could figure something out. We could help out last minute or for a long period of time -- whatever you need. Just let us know through J.J. or Flora -- my facebook friends. :-)
I wish I could do more, but this is what hit me as I read about Steve's progress. Maybe it might just be the thing you need some time soon or not soon -- the offer remains open.
On a side note, Flora ... you are a very entertaining writer!