March, 2020
My motor neurons are following my general personality and degenerating away. Big impacts are occurring in the bulbar region, so named for the bulb of motor neurons at the base of your skull where the join up with your spinal cord.
For now this means, among other dysfunctions, I can’t curl my tongue, chew or swallow normally.
So, I finally had to get a feeding tube installed. Although my experiences with Stanford Health have been excellent and the professionals extraordinary, this was one for the books. Talk about a goat rodeo. Procedure was delayed by months due to perceived need to spend a night in a hospital, that was then quite full, as a result of Doc’s general concern over ALS weakened respiratory system which was later negated by the pulmonologist. Delay also from trying to coordinate with the must have anesthesiologist who ultimately didn’t make it to the procedure.
Met with the surgeon and told would be provided with the procedure date in a few days and to expect something in the next few weeks. Couldn’t get a confirmed date for weeks due, we were told, because of difficulties coordinating schedules. After almost three weeks got a date one month later. Were told we would be contacted before the procedure for a pre op visit. All for a five minute procedure.
In December we made a follow up appointment with the care team. Earliest available date was not until April, I kid you not. Later managed to get an audience in February by subbing a PA for my regular neurologist. Met with a pulmonologist who determined my lung capacity was great and therefore highly unlikely I would need to spend a night in the hospital.
End of the week before the procedure and no call for pre op appointment. Laurel is working email and phones with no response. Finally, the Monday befoe the Wednesday go date Laurel gets through. They ask if we can come down that afternoon. Seriously. Agreed to meet the next day. Everything fine except for a bad EKG electrode which even after replacement showed an irregular heartbeat. A nurse, physician assistant, and attending doc can’t hear a thing so I’m cleared for takeoff.
One technicality. We don’t have a time. Laurel’s working the phones, and asking during the preop, and we are given different times spread over a three hours period. For a five minute procedure. Finally that evening get a definite time to report. Fingers crossed.
Check in and prep go smoothly and soon I’m on the gurney courtesy of the cocoon of claustrophobia (aka a Hoyer Lift). Wheeled into the OR I am greeted by a nurse, two aenestheologists (don’t you love teaching hospitals), an attending physician and the surgeon. For a five minute procedure.
Now for the real joy. The surgeon comes at me with a light tipped cable that looks like Alien baby. He wants me to swallow the sucker. If I can’t do this on my own its intubation time. No pressure. Notwithstanding ALS’s hit on my swallowing reflex I get Alien baby down the hatch and everyone is putting their stuff away. Thank goodness that aenestheology resident was fast on the trigger.
Brain haze into post op. My eyes feel like someone is wiping them with a belt sander. I’m screaming at the nurse about my eyes but because ALS has taken away my voice he’s probably hearing “Gin on ice”. Finally Saint Laurel walks in, tells the nurse my eyes are stinging, and a squirt of saline makes all right with the world.
Get home a bit after noon with a foot plus of surgical tubing coming out of my stomach and no supplies and no training. Laurel hits the phones yet again. That night three cases of high calorie ingestible sludge are delivered but no administration syringes or other supplies. Next day a home health care nurse shows with supplies and training and we’re off.
Months later its COVID time and need to get tube replaced with a permanent port. Laurel is, you guessed it, hitting the phones for more than a week with no return call. All for a five minute procedure.
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Embrace The Suck 
Wow Bob- what a roller coaster ride, glad you 2 are on top of things. Keep it up! Luv & miss u, Catherine
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Oh, dear sweet Bob and Laurel, thank you for this blog and update. We have been thinking of you both and remiss in letting you know that. The Goat Rodeo experience is as unbelievable as it is disturbing, but you managed, as we have come to expect from you Bob, to find the humor and the caring to let us in on it all. That takes a very special person, as we know you are. Saint is a perfect title for Laurel. I wish there was more we could do besides letting you know how much we appreciate this blog and love the two of you. We are holding you both in our thoughts. Keep writing, even though I imagine that is bit of a daunting task! Love, Rick and Sandy
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Wow that was powerful, Bob. Your spirit is amazing. Thanks for giving us a window into your life. Wish we could do more than peer in, but it’s still good to share In your experience just a little bit. Much love, Nancy (and Dick)
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Hi Bob–I am so glad to be able to hear about your experiences, thoughts, and feelings, because I think of you and Laurel so often. Thank you for sharing. The details are vivid and interesting, and some are so hard to fathom. You’re a great writer (for a lawyer! ha ha). We are sending love your way daily.
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Bobby, every note I play this year in Legally Blue I play for you…even the right ones.
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Bob, this is the best written blog by someone using only their eyes. Great to see your senses of humor and irony are much stronger than the awful squatter that’s taken up residence in your body. Thanks for writing this. I have been thinking of you, am so glad to hear from you and always am reminded of the important legal work you’ve done that continues to make an impact every day.
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Hi, Bob! . . .
I don’t even know you, but I’ve heard a lot about you from Jan, with whom I have been painting (not as well as she) for perhaps 15 or 20 years now, and already I’m impressed beyond belief! You are obviously the extraordinary guy she has always said you are! Now I have the evidence!
I’m the one with the dual American-Irish citizenship, one of 19 first cousins on my mother’s side, seven of them born and raised and who have lived all their lives in Ireland and among the twelve born to emigrating siblings in New York City (our parents were “sponsored” by our great uncle — our grandfather’s brother, if I have that right). My father and mother emigrated from Ireland in 1926, meeting in NYC, and marrying. My father was a courier for the British Admiralty, housed in the British Embassy in Washington, D.C., traveling back and forth every day between D.C. and NYC, and most importantly for me, bringing back NYC newspapers (We had the WaPost at home)!
Even as a child, I was the U.S. family “correspondent,” and have been lucky enough to visit Ireland, as I know you and Laurel have done, in my case, for perhaps more than 10 times (not sure about the exact number). My first visit was in 1966, so quite a fortunate set of experiences over quite a bit of time. I was always supposed to get together with you to talk about some of those visits! So a little late and quite sorry not to have done it sooner, but here I am! Ask me anything. If I don’t know the answer, I’m Irish, so I’ll just make something up! Ha! Ha!
So impressed with your efforts and your site!
Slainte (Irish for, “to your health!),
Kay
Well, actually that’s my “U.S. name;” in Ireland, I am “Kathleen Mary Kearney Keeshen.”
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Hi Bob, Thanks for a very entertaining, well-written post. It breaks my heart. You are an amazing, inspiring person. Was your father a CPA in San Jose? If so, I represented him in an attempted purchase of a moving and storage company. I have been meaning to mention it for about 30 years. Looking forward to you next post. Karl
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He was and his firm still bears his name
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Hi Bob and Laurel <3,
Is there such a thing as a Nurse Navigator or RN Case Manager for you at Stanford?
Let me know if you would like me to research services for you- honored and happy to do for you!
Love and hugs,
Carolina (Marg has my number- call me if needed!)
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