Hey everyone,
As many of you know I was recently (Jan 21st doesnt feel recent anymore) admitted to Northwestern’s Intensive Care Unit (ICU) with breathing issues due to a failure to clear secretions from my lungs with my many machines. ICU sucks. You go in with one problem and often leave with many. The threat of kidney failure, high blood pressure, pneumonia and a heart that suddenly weakened is a few I endured during my 22 day stay. I’d say 6 or 7 of my 10 worst days in life were experienced here. The antibiotic meds caused my kidney creatinine levels to skyrocket, which in turn caused my blood pressure to soar. Or was it the other way around? No team of specialists could tell me but they visited so often that you can thank extended and mostly unnecessary ICU stays like mine for your high premiums and deductibles. RIDIC. Oh and I just laid there for 22 days, maybe getting up a dozen times to my wheelchair. All your muscles begin to deteriorate (even more so with the progressive nature of ALS).
The decision was made for tracheostomy surgery and connection to a ventilator to breath for me. The other options were to 1. Aggressively clear secretions from home 24/7 until an emergency surgery was necessary (likely real soon and performed by an ER doctor instead of the expert Dr. Bove who performed my surgery) or 2. Death. That made my choice fairly cut and dry, I'd say. As an education, I now breath from a hole in my neck rather than thru my mouth and nose, which comes with its silver linings. First, I no longer have to wear a breathing mask, which was becoming 15-20 hours/day the last couple weeks. I can also now lie flat on my back without gasping for air. No more mucus in my mouth; it gets cleared out before reaching my trach. I'm much more kissable. Also, no air goes thru my nose, which basically means I can’t smell, at least not well. No more torture pizza and butter popcorn smells, I’m loving it. Of course, I had perfected my passing gas games, subtly moving from a group at ground zero to down the hall at the first whiff of disaster. Now my life’s been turned upside down. Was that one ok? Or was is it a SBD? I’ll never know.
After 22 days of hell and feeling legitimately schizophrenic (ask my visitors), I was basically paralyzed from inactivity and it took 4 people to get me from bed to chair. Day 23 I was finally admitted to the Rehabilitation Institute of Chicago (RIC) so my family could learn how to manage my trach (no small feat) and I could rehab to get my strength back. I’ve been here now for 31 days and I’m finally going home today. I’ve made tremendous strides to regain a lot of what I lost cooped up in ICU. It is really an exceptional place. I am down to 1 finger typing now so this took me longer to write than it took Shep to graduate. I’ve also learned how to live without internet….fuck, its brutal!
It wouldn't be a blog without at least one inappropriate story, and there is few to choose from. I think my favorite one is when I had to get a urinary catheterization. I had not known this bundle of joy existed prior to my stay. Well the young, innocent catholic girl nurse (we’ll appropriately call Mary) didn't know what she was getting into. It had been an already long stay, my wits were jumbled and I was reduced to my primate form. I got a little bit too, uh, excited and Mary shouted “Oh my!” Her 2nd attempt was just as futile so she pronounces “I’ll have to get Dave in here.” No worries, right? Wrong. Dave was already pronounced “hot” by the women there with his bad boy tattoos. I’m immediately transformed into George Costanza right before his encounter with the male masseuse pondering questions like “what does it mean if ‘IT’ moves?!” Am I going to have to reassess my wants and needs? As soon as Dave got anywhere near my little 'E' with that devilish spear, I was writhing in pain. Life change averted.
That's all I got for now. Sorry I couldn't reply to anyone that has texted or emailed me. I was almost finished with my previous blog before I came in here so I’ll be posting that one within the next few weeks. Special thanks to my awesome family/wife for taking shifts these past 54 days to ensure I was NEVER alone, day or night - truly incredible. Shep and Williams - you are family, thanks for taking care of me so much. Thanks for all the visits and good wishes. Thanks to Mesirow Financial, who continues to stand by me. In a world of corporate greed, I continue to be humbled by the employees of Mesirow. Also, some fabulous work was done on a new room for me at my parent’s house. Uncle “Buck” Tom & Co. (including my bro-in-law Mario), what can I say….you're a crazy mo fo - thank you, the room is awesome!