June, 2020
Because folks have asked, here is a report of our latest sojurn at the Stanford Health Resort.
Arrived Thursday morning, early for our appointment, for a feeding tube conversion. Everyone assures me it is an easy, quick, in the exam room, procedure. Conversion replaces the tube hanging from my stomach with a little button which ports to my insides. New assembly, known as a Mik Key for reasons unknown to me, is composed of a nozzle with a balloon to be inserted into my stomach. Once inserted, the balloon is inflated with saline and presses against the inside stomach to keep everything lodged in place.
Surgeon yanks out the old assembly. Yes, there was pain. Tries to fish in two different sizes and his eyes are not happy especially after he sees me wince. Time for an x-ray and the injection of contrast provides even more pleasure.
Schlep to Imaging in another building. Procedure involves shoving a thick board under my back to x-ray the stomach. Not recomended for those of us with lower back problems.
Surgeon doesn’t like what he sees so it’s off to the Emergency Department. We trek through near 90 degree heat to the other side of the medical campus. Get a Covid test, which we later find out is negative, and I get transferred to a gurney. We spend the next two hours overhearing cases of attempted suicide and other discomforts as we wait for an interventional radialogist to thread a wire into my stomach. The team finally arrives and using a long wire with a right angle bend at the tip, the IR is able to access the stomach. X-ray, complete with lower back pleasure board, confirms wire placement. Then the really good news. Because it is now 4:30 there is no way to get an operating room and team together so need to spend the night in the hospital.
We have been asking for my meds. Of these baclofen, a muscle relaxant, is most critical because it keeps my legs and chest from stiffening into rocks. These stiffening spasms are somewhat painful and damned uncomfortable. Because of the energy used by your body to stiffen your muscles you generate a lot of heat. We have been asking about taking meds but don’t really get an answer.
Stanford recently built a 2.1B expansion. Unfortunately the state of the art wards are not for us. Instead, at two doses short of baclofen we are wheeled into the old hospital. The room appears to have been designed by an architect borrowed from the Stalin regime. The windows are all frosted except for the one covered in sheet metal with a duct attached to a air purifier looking like an angry robot from an old Twilight Zone episode. It is also hotter than blazes and the only air I can feel is from a small wall mounted fan that you could get at Costco for $4.99. I scream which Laurel correctly interprets as “Get us another room!”. Once they finish registration and a shift change we get wheeled into a new room. Same decor, same fan and angry air purifier, but at least we can see outside.
It is now 8pm and muscle spasms are coming every 3 minutes or so. Plead for baclofen and head nurse calls to the on duty resident. Resident, we are told, consults with ALS Fellow, and we are informed in an hour or so that I am to have no meds. Meanwhile I am on an IV saline drip which requires me to wake up Laurel every 45 minutes to piss. Sleep is not an option. At about 1:30am my spasms are off the charts and Laurel goes to work the head nurse. Intern is consulted who says I am going through Baclofen withdrawal. You think?
Nurse says they have to run a tube down my nose and into my stomach to allow me to take the pills. Thinking I have no choice I say OK. When she comes back with her stuff she explains an x-ray will be taken to confirm tube placement. Remembering the board under my back, I scream. Laurel explains I can and still regularly swallow and we can crush the pills and add water to suck the cocktail through a straw. She consults the intern and I finally get some relief. If only we could sleep.
That morning my neurologist unexpectedly arrives and orders an extra half dose of Baclofen. Team from Emergency stops in and says expect procedure late morning early afternoon. Nurse says the “board” shows us going in at 8:30 but by 9:30 finds out this is wrong. Not having eaten since the previous morning, Laurel gets breakfast.
Shortly after 11am rolled into pre-op and into surgery about an hour later. As I come to thumbs up from the team. Rolled into recovery in the tail end of a fentanyl buzz. Nurse on the phone with Laurel who needs to come back and interpret my screams. Nurse says no at the same time she fails to understand my pleas to pee.
Finally at home 3 hours later. Laurel reminds me Mic Key needs to be swapped out every three months. Should only take fifteen minutes.
Embrace The Suck 
OMG Bob and Laurel !!!!!!
Believe me , I truly understand this post and have heard many stories from patients their harrowing experiences !! I have to admit , I did laugh ( not at your expense or frustration level) but it is so typical at this point in our health care system….
Hopefully your new Mik Key will be more comfortable for you !
We think of you guys often.. ❤️🥰 . Much love , Kim
Sent from my iPhone
>
LikeLiked by 1 person
What an ordeal! Thank heavens Laurel is there for you! Hang in there!
On Sat, Jul 25, 2020 at 1:23 PM Embrace The Suck wrote:
> embrace-the-suck.blog posted: ” June, 2020 Because folks have asked, here > is a report of our latest sojurn at the Stanford Health Resort. Arrived > Thursday morning, early for our appointment, for a feeding tube conversion. > Everyone assures me it is an easy, quick, in the exam room” >
LikeLiked by 1 person
What a terrible experience!!! Every three months? Is Stanford so disorganized they can’t plan this procedure more efficiently? It sounds like you were treated like an after thought. “OH yeah, we have to do something about that Hawn guy. Let’s just shove him in a room until the next shift comes. They can deal with him.”
It’s unreal.
I’m sorry it happened to you.
Jan
LikeLiked by 1 person
Bob thanks for sharing. I can see and feel what was going on. Kayla had to go to the ER at Stanford for the same procedure and had her G-tube placed there . Fortunately her experience wasn’t as traumatic. Mia came with her G-tube already and we haven’t those issues.
My wife just had surgery at Stanford. She ended up in one of the old rooms and I totally got your description. We got moved after a few days to the new hospital and it was like a different word.
Changing a g-tube is hopefully easy for you. I do worry for you. Relaxation of the muscles is key. Distraction helps.
LikeLiked by 1 person
Paul Thanks for your comment. Would you have a referral to a GI doc who could help me with my G Tube?
LikeLike
Geesh, Bob, this is painful to read and I didn’t have to go through it all. You, and most especially Laurel, are a real trooper. Seems really stupid to simply say I am thinking about you, but I am. And wishing I could do more. Know that Rick and I love you both.
LikeLiked by 1 person
Geez the hospital without hospitality not listening about your request for baclofen which was sorely needed by you makes me mad And although angry I think I detected your sarcasm at the end of your blog because there’s no way your next appointment will be 15 minutes! Next time packing overnight bag and all your stuff and hope reverse psychology works !
We send our Love from our 90° thunder storming day Marie & Steve
LikeLiked by 1 person
It is so enlightening to get a description of “first world” medicine. Even more uplifting to be allowed to share such insights into the mind of a first class human being. Good to know that music, intelligence, and a wicked sense of humor can produce a light that burns so brightly in such a dark setting. We send our love to you and Laurel. Michelle and Richard
LikeLiked by 1 person
OMG Bob this description of what your going through is hell. I can imagine how bad you are feeling and all I can say “ embrace the suck”has more meaning now than ever.
I pray for you all……I’m speechless and can’t imagine what you and Laurel are going through. Bless you our friends.
LikeLiked by 1 person
Bob, Tamara clued me in to your blog. Wow. I wish I could say unbelievable but, my dad (COPD, Hydrocephalus – mimics dementia and unbelievable back issues) went through horror stories like this at Good Sam. Wish healthcare could get a handle on logistics and care delivery management… I saw what my stepmom went through with my Dad and can imagine what it’s been like for Laurel. I know that doesn’t help but, perhaps knowing you aren’t alone is some comfort.
I see you still have that same wicked sense of humor in spite of the issues. It may not feel like it but, it is a blessing.
I’ll send you an e-mail in the next day. I have some stuff that may bring you a smile.
Blessings for you, Laurel and all your loved ones.
LikeLiked by 1 person
Thanks for writing (so well) to share your (horrific) experience with us! Steve and I think about you so often–I’m glad we can communicate through writing. I’m taking weekly flute lessons now via Zoom and really enjoying playing again. And–I’m actually making some clear progress on tone, and interpretation of the Brazilian choro music. Your love of music definitely inspired me. I’m learning, and experiencing everything I can with flute and percussion, even in these locked down times. thanks Bob, sending you and Laurel love and lots of virtual hugs
LikeLiked by 1 person
no words.
LikeLike