Buckle up Buttercup, its gonna get bumpier, starting with...
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Captains Log
JANUARY 2025
The month begins with calls to Letty, Dr Civantos' coordinator to set up the consults with Drs Liebowitz and Franceschi and schedule the procedure if there is to be one.
That took some doing but we have a tentative procedure date of my February 5 and the consults with Dr's Franceschi and Liebowitz set prior.
JANUARY 21
We have the Tele-med with Dr Franceschi who goes over his part - a Gastric Pull-up, should Plan A - reconstruction of the Jejunum fail. He repeats the risks and questions if I really want to go through all of it. I confirm that not eating, drinking, swallowing, talking or being able to do anything is not living and I'm willing to take the risks.
JANUARY 22-23
I woke up Wednesday having a little difficulty breathing. It felt like I had something stuck in my trachea that I couldn't suction out and it had me worried.
So around noon we called Dr. Selman's office to see if I can stop in to be scoped to see what it was. Selman was in surgery all day, Edgardo the APRN was at lunch and we were told Dr Perez-Mitchell was on call and would meet us in the ER.
So its now 4PM Wednesday and here we sit in the ER at Memorial Regional waiting for Dr. P-M who we are now told that he got called into surgery too and will come when he can.
He finally shows up at 6PM and scopes me to find a mass halfway down the trachea that is narrowing the trachea by half.
He is concerned and wants to admit me overnight so the Dream Team of Dr's Selman, Block and Gannon can see me in the AM take a Biopsy and decide what to do next.
I want to go home and come back in the AM but he and the Attending Dr think that it would be too complicated getting back into the ER if it is swamped in the AM and then coordinating the Dream Team, so I finally agree to stay overnight, but only if they get me a regular hospital bed - I refuse to sleep on the ER Gurney.
Super Star ER Nurse Audrey hustles up a bed in no time and I wait for the next shoe to drop which of course is that now they want all sorts of tests:
Thoracic CT, Peg Tube Xray to check flow, EKG Etc., Etc., Etc.
Illy heads home to pack me a survival kit of Protein Shakes, Meds, toiletries, chargers, cloths and etc., and gets back just after the CT. After settling me in for the night she heads home and I wait for the Peg Xray.
Why this is necessary is anyone guess. I've had the damn thing on and off since 2007 and it works fine but the New attending Dr wants to make sure the meds they ordered will go to the right spot. WTF!?!
The Xray team finally arrives with a plan to take the 2 shots ordered, only to find that the Radiologist who will read the results wants 4 shots from all angles except standing on my head. This turns into a Class A Cluster-Fuck but we finally get it done by 11PM.
Of course, no clearance from the radiologist comes through by midnight so we can't take the meds because they don't want me taking anything in the tube past midnight in case the dream team wants to operate on the obstruction in the AM. Oh JOY!
Good thing I had a shake at 10PM, the only thing I had to eat all day.
It all turns out as expected, another sleepless night in the ER due to the damn monitor alarm going off every 20 minutes because by now my blood pressure is off the charts.
I finally get up and shut the damn thing off only to have the Nurse panic when she is not getting vital sign readings. We agree that she can get readings every 2 hours as required as long as she shuts the monitor off in between.
I send her off for some pain meds and something to help me sleep and that takes another hour.
By now its 3AM and I finally nod off only be to be awakened for more vitals.
I finally get a few hours sleep and Illy shows up at 8AM so she can be there for the Pre Op call from Sylvester regarding the Feb 5 Procedure. That goes as planned and they may have to postpone the procedure until we see what happens here with the obstruction.
Dr. Selman and Edgardo finally show up around 10am minus Block and Gannon and get right to work taking a biopsy of the mass and he decides I can go home and wait for results.
Now wasn't that a dandy night of FUN? NOT!!!
Hydration on Friday and a mediocre massage finish the week and we wait to see Selman on the 30th for a follow up and Plan B regarding the mass in the trachea.
JANUARY 28
We met with Dr Leibowitz about the Feb 5 Procedure and all that the patchwork entails including taking piece of skin from either thigh or my forearm that would use the one of the two arteries feeding the hand. Hopefully the Ulnar artery will provide enough blood to keep me from losing any fingers. WTF?!?
This just keeps getting Better!
JANUARY 29
Hiked down to Sylvester in Miami for preop lab work which is a joke. The most inefficient operation yet.
You get there for a 10:15AM appointment, only to wait till 11:00AM to go in to be issued the soap to wash with before the operation, and then you got back to the waiting room to wait for the EKG where she takes you into one room to sign a paper, then to another room to wait for another 20 minutes before she hooks up 2 dozen leads for the EKG which takes longer then the actual test. Then out to the waiting room again to wait for Blood Type and Screen. In all we finally get out at 12:15pm for what should have taken 20 minutes.
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Captains Log
February 2025
February 2
Brian calls to say he is flying down on Tuesday to be with Illy while she waits, trying not to drink all the stale coffee in the hospital cafeteria. That’s a relief. I’m so concerned about her. She has been so strong through all this and am glad he will be there to support her. Cristina was planning to be there and still may go down later.
February 3
U of M Hospital rules are that only one person can be in the OR waiting room and this doesn’t not sit well with Illy who then calls patient services at U of M to get approval for Brian to be with her in the OR waiting room and in ICU after. They give her a bit of push back but you don’t get her “Cuban” up and survive. They begrudgingly agree to let him be there as well.
February 5
I guess I made it 'cause I'm loooking up at the smiling face of my one an only love who is mumbling something that I am having a hard time hearing becuse I'm still coming out of the fog.
Just then then I
see Dr Civantos leaving the room also mumbling something to the affect,
“we did the best we could do.” Whatever that means. So, it’s off to the
ICU for a few uneventful days with the great team of Amy Morales and Evenie
Miralles who did their very best to make my stay as comfortable as possible
including making a makeshift heating pad for my stiff neck.
February 7
I’m transferred to
the Head and Neck ward on the 7th where we had a few drama nights but nothing
worth elaborating on.
The Fistula that has
been stitched closed starts to open a little and they begin to pack it all with
gauze.
The drama continues
including having to move to room 727 because for some reason all the sensors
and monitors in room 725 stop working. The drama starts getting too much
for me and I convince Dr Liebowitz to let me go home and let Illy do the
packing, she has done it before and is a pro at it.
February 13
Headed home and
hopefully a restful time as Illy is back to her Packing detail.
We actually get to
walk around the block a little to get the kinks out.
Before I went in for
the procedure we had ordered and new pillowtop and casing for our Sleep Number
bed and they installed it while I was in the hospital. Oh boy is it wonderful
to sleep in my own bed!
February 17
The Fistula has
opened up tremendously as well as the stoma opening is receding deeper and
getting harder to get the Lay Tube in. We are both concerned. A call to the
Dr’s nets orders to head to the ER at the UofM Tower where they immediately
admit me and I'm back on the 7th floor in room 716, right next to nurses
station, which is fine by me, a punch of the call button gets quicker
response. But… it also gets all the noise of other calls
etc. Gotta keep that door closed!
February 18-March 10
Pretty much the same
bits of drama, with all the E.N.T. Residents packing the wound 3 times a day including
Christine, Luke, Maria and Tonya
but the wound is not getting smaller
and Dr. Leibowitz decides we need to do a Pectoral Flap to close it
up. Apparently, they took 1/3 of my clavicle out to get to the
throat issue due to the jungle caused by all the radiation caused fibrosis.
And of course, in
doing all this for some reason he has to create a “controlled” fistula at the
top of the stoma that pretty much defeats the whole purpose of the throat
opening procedure to improve swallowing. Sure, I can swallow, now… but it leaks
out the fistula and down my chest. Oh Joy.
All this includes
adding 2 drains to remove the fluid buildup, and a girdle to keep the pec area
closed where he took the muscle to close the wound. The girdle is very
uncomfortable and itches in all the wrong places.
March 11-March 24
I get little bits of
sleep between having to suction to breath and pee breaks every 2 hours. And
this goes on for the 6 weeks I'm incarcerated at UofM Tower.
I manage to break in
most of the nursing staff in that I am very independent and can do most of everything
for myself and only call them when I really need help. Better they
have time to attend to those others in the ward that really need close
care. They appreciate it and acknowledge it often. Some of the best: Anais, Karla 1 and Karla 2, Vanessa, Darling, Camilo and so many more.
I have Illy bring
donuts for the staff one Monday and Bagels with cream cheese on another as appreciation for all
their fine care.
Over time the drains
and girdle come off and I actually get a bit more sleep until they release me
on the 24th to the custody of my Number One care Giver: Illy the
Magnificent One.
March 25 –31
Home Sweet
Home! My own bed!! It just keeps getting better and better!!!
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Captains Log
April 2025
My calendar fills up quickly with Dr. appointments. Dr. JZ decides we should start on KeyTruda every 6 weeks to treat the Liver issue and schedules me to see Dr. Rejtman for pain management.
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