I Ain't Ever Satisfied

Now that real food has been allowed to grace my tongue I would have thought all was good.  It is a slow start, but very positive.  But now, it is like I have to learn how to swallow again.  I am super conscious of how solids and liquids feel in the mouth and throat.  Is it really working? 

The Speech Therapist asked if I wanted to repeat the swallow test that I failed 2 weeks ago.  She could tell I was anxious about it.  She asked last week and I put her off.  This week she asked again.  I realized I should find out how it was working, whatever the outcome,  from the standpoint of the Doctors.  Damn that anxiety.

And then there is the pain from the incisions, the internal remodeling and the feeding tube.  I'm anxious for that all to heal.  I need those pain pills but want to wean off of them.  - Never can be satisfied. -  It is a long hard road but when I get closer to the end, I want to cross that finish line.

Someone needs to smack me and say, "patience, son."

Thanks.  I needed that.

I know this will all work.  And there will be plenty of other challenges too.

It really is priceless having Dottie there.  And all the family and friends too.

Check out Steve Earle doing "I Ain't Ever Satisfied."  Great song.

I caught this pic of a Woodpecker who couldn't fit at the feeder so he had to learn how to eat hanging upside down.

Tethered

The Feeding Tube can be a harsh mistress.  It can be a life saver too.  I have been feeding from it since last Tuesday, my first real nourishment since before the surgery.  While I am grateful for the sustenance, the tube cast a shadow, at least in my head.  Would this be my future?

After we left the hospital we had support form Home Health Care (HHC) which was great, but we wondered who was guiding the recovery of this particular bodily function: getting food into the body.

We saw a Speech Therapist last week who gave me exercises to help with swallowing.  She then waited for the okay from the insurance company for permission to continue.  Yesterday, Dottie started calling the insurance Co., HHCS and the surgeon to try to get some movement to get this rehabilitation going.

Today it came together.  The Speech Therapist got permission and came by.  She said we would do some swallowing and set a bag on the table with my first real food in over 2 weeks.  I was excited.  She opened the bag a pulled out … YOGURT!  I bit my tongue.  I did not tell her how I felt about spoiled/curdled/fermented milk.  She took a spoonful and offered it to me.  I took a bite.  I tasted it.  I swallowed it. It was awesome.  The muscles worked.

The Therapist returns on Friday and we may start soft foods. I know this is just a start, baby steps, but it is very reassuring.  I'm still tethered, but there is some light sneaking in from behind that cloud.

My Valentine

Now that I have been home a few days, we have gotten into a pattern.  Luckily for me Dottie has embraced pushing my meds and food and keeping track of times and amounts.  She also runs the errands and takes care Gilligan and herself.  If you told her last week she would be doing all that this week she would have laughed at you.  She is amazing.

Besides the meds and feeding, for me the pattern includes naps, exercises, taking vitals, Words with Friends, etc.  I want to add some more projects but my energy level is still pretty low.  I'm the slacker.

We have had a couple of visits from the Home Health Care Nurse who instructed us on the meds and feeding.  We are happy to have her support.  We also had a visit from a Speech Therapist who has given me a number of exercises to help with my swallowing muscles.  She is very positive about overcoming this issue and gives us a lot of hope.  I can't wait to really eat and drink again.  And like a friend of mine just reminded me, "I've been swallowing for 60+ years."  How hard can it be to get going again?

I was trying to think of something else to write (on the light side), and this just happened…

We have been changing my dressing everyday after my shower.  Before putting the bandages on we use some antibiotic cream.  Today I grabbed the tube of cream from the bag we brought home from the hospital…

Luckily I caught it before I applied it.

----------------------------

But I'm mostly lucky to have such a great partner, nurse and Valentine.

Welcome Home…

…Now get to work. 

This morning I had my usual early morning visit from the surgeon, and the surgeon said, "No more monkeys jumping on the bed." 

 It was more like , "Get your ass up and out of here."  Since the modified swallow test was a failure, his work was done.  He requested an ENT doc to visit to help figured out this next step.  Otherwise we were done, dismissed.  I was discharged with my feeding tube intact.  The crazy thing is that back when I said I couldn't swallow I meant things got stuck in my esophagus.  Now something happened to the muscles behind and immediately under my tongue.  They stopped working, allowing foods to go down the wrong way.  How nuts is that?  And nobody knows how this happened.

So, they sent me home.  The plan is for a nurse to provide home care along with a Speech therapist to help with the swallowing exercises. How long will this take?  No one knows

As one might imagine, we are very frustrated.

All I can say is that I am determined to test drive this new esophagus.  It may take a while but… As one crazy SOB said, "But I tried, didn't I? Goddamnit, at least I did that."

Here I am at my dinner table.

Watch out if anyone ever tells you, "no eating or drinking after midnight."

Modified swallow test

Just a quick update. Today, George(Mike) had a modified swallow test with a speech consultation.  Unfortunately, he still had difficulties with aspiration when he swallowed.  For some reason, the swallow muscles are not working like they should to push things down his esophagus.  The staff are not sure why this is. It is no where near the new attachment site.  He has been given some swallowing exercises to hopefully get these muscles stronger and in working order.  The problem is this may take some time, possibly weeks.  Meanwhile, he's otherwise recovered well from the surgery.  All the multiple tubes are out except for his feeding tube & IV, which go directly into his upper intestines, which is still his only source of nutrition and hydration.  He's walking laps 3-4 times a day around the floor. He looks really good, but feels extremely frustrated.   Ultimately, it will be up to the surgeon as to when to discharge him, and we've not talked with him since having the test.  I can't imagine they will want to keep him for weeks, but also, I can't imagine them sending him home with a feeding tube.
Just know, George is diligently doing the swallow exercises, and if anyone has the determination and grit to get those muscles in shape, it is him.
He has his iPad and iPhone, so if you want to email/text him, you can.  Before you visit, you may want to check and make sure they haven't sent him home.  You never know.
Thanks for all the support!

Where am I?

Hello everyone, I'm having a great time here at MoBap flats all-inclusive. The weather is good ( better than outside. )  The operation here went as well as can be expected.  And we just got news Friday that the pathology reports showed NO cancer. That is awesome!  Huge!!

                      

                           Flipping off Esophageal Cancer

Next stop is the ICU.  Great service there too. Even the food is fantastic. The ice chips have an excellent sauce.  The tubal plastics are amazing.   My main problem while there was sleeping.  It was a bit odd .  I could fall asleep quickly but woke up every 45 min. Unfortunately every time I woke from a dream I could not tell where I was ( very disorienting ).  Real life was the dream.  It took a few minutes before I knew where I was.  I thought the surgery had not happened yet. How could I be at MoBap??

Two days later I was in a regular room.  Same great food (nada) .  I still fell asleep easy but eventually, waking at MoBap was not disturbing.   However, I was annoying to 2 nurses.  One for moving on my own 2 feet without help. The other was early in the a.m.  I was trying to fix a beeping IV monitor.  I basically dismantled parts, making more work for them. 

 Before they would allow me to eat, I had to pass the Swallow test.   Complications occurred at the beginning.  The swallow tests now requires modification.  We now have to wait until Monday.   Luckily, a nutritional IV is keeping me nourished. 

                   

                        Friends at the trailhead of Metaphor Mountion. 

ICU later

George has been on the accelerated recovery path.  His surgeon brags that he had fewer complications with George's surgery than he has ever had with this type of surgery. He was moved out of ICU on Thurs. and into a regular room.  He's done well there, though, his first night, he got into hot water with the nurses by getting out of bed and trying to take care of things himself, unplugging various things, taking out the battery of some monitor, etc. He got royally chewed out and given a bed alarm.  

Sorry for the delay in posting, but we've been waiting for the swallow test.  We were led to believe it would happen several days ago, only to have the doctor finally tell us it always happens 5 days following surgery.  I guess this surgery is so infrequent, many of the nurses don't know the "usual" protocol.  Anyway, they finally did the test today.  The results were mostly good.   The great news was there was no leakage in the new connection.  The only concern was George seemed to aspirate some of the fluid into his lungs when he swallowed.  This has meant he was delayed in being able to start a liquid diet today.  The speech people want to do a test Monday to see what is causing the problem.  Meanwhile, tonight,  the surgeon let him take a few small sips of water, and he seemed to do OK.  So what all this means, I really don't know, but the surgeon thinks he'll be fine.  The pathology of the tissue that was removed, all came back cancer free.

He got rid of most of the multiple tubes he had coming out of him, so he's more mobile and able to get up and walk around.  

I think he can handle visitors pretty well, so feel free to come by--just keep it fairly short.  I think he is a little sick of me!  He's in room 1266 in the East Pavilion at MoBap.

A snowy step towards recovery

George did well over night. The nurses already had him up to walk and sit up early this AM. Even with all the drugs, he's in plenty of discomfort.  He has all sorts of tubes coming in & out. His mouth is so parched! He's not allowed to drink even a drop of water. His big treat is that they let him swab his mouth with a small sponge dipped in ice water. He needs it dipped in whiskey!  He's in fairly good spirits & able to make jokes. The next big milestone will be the Swallow test--got to make sure there's no leaks in the plumbing!

Ouch!!!

After an hour delay due to someone aspirating a tooth into their lung, George's surgeon got to work on him. All went well and according to plan. He landed in CVR(ICU) around 1:30 and is amazingly aware and coherent. He has Al taped to the foot of his bed watching over him.
Thanks to everyone for the good wishes, prayers and support!

Game On

I got the call Friday at about 4 PM.  Surgery is scheduled for Monday (2/3) at 7 AM at Missouri Baptist Hospital (MoBap).  We have to be there at 5:30.  That is no big deal.  We probably won't sleep much anyway.

Nothing to eat or drink after midnight.  I have special soap to shower with Sunday night and special wipes to clean with Monday morning.

We have been feeling kind of anxious this past week in anticipation of the event.  What helps is to think about other events we have planned in March, April and May.  We spent Friday night with the family: some pizza, a little Elmo, conversation, fart jokes and some music of course.

                                                       Lucy with my dynodaug cap on.

Dottie will post on the BLAUG after the surgery to let everyone know how it went.  I will be in the ICU for at least 3 days.  When I get to a regular room I should be able to receive visitors (as long as the morphine holds out).  Dot will post about that too.  The Doc said I should be in the hospital 8 - 11 days.  I know what I'm getting Dottie for Valentine's Day: a patient to nurse at home.  Sorry, Honey.

Hopefully, the groundhog doesn't see its shadow, so we can recover quickly from this winter of our discomfort.