August, 2021
I closed off the last blog on this subject by promising a discussion of my feeding tube. If that doesn’t scare you away then I’m simply out of ideas.
I’ve discussed my adventures with the feeding tube in my blogs with the words Stanford Health in their titles. The business end of the assembly is lodged by a surgeon through a hole in my stomach. Once placed, a saline balloon is filled with, you guessed it, saline, to press the apparatus against the interior stomach wall to hold it in place. The otther end pokes out of my belly a little northeast of my button, and contains a coupler to which a tube is attached periodically throughout the day for watering, feeding, and drug ingesting. The tube is attached to a syringe, the size of which could vaccinate a large elephant. Into the syringe is loaded everything I need for watering, feeding, drug ingesting, and my daily ration from the good folks at Gordon Biesch Brewing Company. Slam down the plunger, slowly please, and it’s a direct shot to the gut. Better than a beer bong.
I’ve already blogged about the nebulizer, which looks like a desktop modem from 1990 but without the lights. It does have a tube, however, which connects to the respirator line at a junction which St. Laurel refers to as a whale spout.
On to my favorite subject, breathing. I’ve previously discussed the respirator and how it makes me sound like Darth Vader, so I’ll bore with the oxygen machine. The name of this device escapes me, but it looks like a lumpy parabola on casters with a lot of inventory control stickers. This slick little droid pulls oxygen from the air and sends it through my respirator in various concentrations. With a moderate whirring and a rhythmic piston, it reminds me of the sound of a mad scientist’s laboratory from a black and white horror movie. When it starts up, the oxygen smells like browned garlic. Really. Especially first thing in the morning.
Well, there you have it. All the life support tools and more that keep me going. More than you ever wanted to know. Many thanks to all the engineers and others that have brought these medical mechanical marvels to us pALS. Even if they do smell like browned garlic in the morning.
See you next time.
Embrace The Suck 
Hi Bob, apologies for having gone missing for a few recent fascinating blogs. Had to pick myself up off the basement parking lot floors ofStanford Health Emeryville eleven days ago, and falling on my extended right arm apparently loosened some ligaments. I am not ready for a Lazy Boy on wheels thoughI keep tending in that direction, With this fall, I do find myself escaping in the middle of the night to my cosy chair in the living room when I have no further ways of sleeping without pain in bed.Your adventures require more bravery and inspire me in my more modest travails. Thanks, Dick
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Keep blogging, Bob. It’s always good to hear that wry sense of humor.
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glad to hear you get to your daily ration Gordon Biersch. Hope it’s Marzen. Also hope you get to see some of the San Jose Jazz Summerfest remotely. We plan to go on Sunday because the lineup looks good with Kurt Ellington, Charlie Hunter and more. We will toast you with a glass of Marzen while we’re there.
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OMG, Bob, so glad that creative, brilliant brain has not been lost! You write so beautifully, even if what you write about is less than beautiful, but it is what it is. Your use of words, the way your describe things that are less than beautiful–but that’s what they are–is admirable and I appreciate it. Will miss you at the Jazz Fest when I would have loved to be able to push that button and spun you around again if I could, even if it made you a bit disturbed. But you were still laughing, as you always are. Love you!
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Providing laughter with your descriptions is certainly a talent!
I’m going to have to ask the size of an elephant syringe on my next zoo visit……..
Meanwhile ageed that the engineer inventors of oxygen concentrators, respirators,
all things gastric feeding tubes are a blessing to keep you blogging!
So now I’ll find out more about this beer diet from St Laurel – Hugs & love!
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Hi Bob–thanks for taking us into the wild and evidently fragrant world of specialized medical technology. Thank the goddess for all of that innovation…I hope it makes you as comfortable as is possible, so that you can continue to share your musings and beautiful mind and sense of humor with us. Speaking of, if you ever feel inspired, I would love to hear your advice about how you approached improvising. I’m starting to dip my toe in (on flute with the Brazilian choro music) now that I have some basic understanding of chords and progressions. Any advice about how to practice? how to prepare to perform when you suspect you’re going to be called on to improvise a certain section?
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Hi Bob – Clark & Easter here! Thanks so much for your medical report ..and your sense of humor. This blog is an amazing thing that you’re doing. Of course, sometimes it’s difficult to read… but you’re living it so, we aren’t complaining. Your so selfless and talented. Speaking of talent, we spoke to Lynnie today and I was reminded about the fun time I had seeing you and your band perform a few years back in San Jose. Very memorable! Easter wishes she could have also experienced your performance. Bless you all and will talk to you again soon.
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