Sep 29: Healing, Tethered to the Feeding Tube

It has been 10 days since I got home from the hospital.  For 18 hours a day I am tethered to the feeding pump.  This is roughly 6pm to 12 noon.  Then from noon till 6pm I am free.  I do mostly the same stuff when I'm free as when I'm tethered.  Martha and I go to the track at Southridge HS so I can get some exercise.  I walk at least 1/2 mile, sometimes 3/4 at a session.  One day Martha and I went twice, once right after I unhooked and once before I hooked back up to the pump.  Powell came over and walked with me on Friday.  It was raining and a little windy.  Yesterday the rain was so bad I did not go.  Today may also be a too-rainy day, we'll see.

I spend 99% of each day just hanging around the house reading, browsing the internet, watching TV etc.  I am working 1/2 time (since Wednesday) and I start working full time this coming Wednesday.

I have had nothing to eat or drink through my mouth since the surgery, which will be 3 weeks ago this Wednesday.  We meet with Dr. Dunst (my surgeon) a week from Tuesday.  She wants me to have tried some liquids (including a milk shake) before we meet with her.  I'm going to start the liquids on Saturday.  Slowly, water first.

I have had no serious problems.  When I first got home I could not sleep on either side - my abdomen hurt too much when I tried.  Now I can sleep on both.  This makes a big difference and I'm sleeping ok.  Not great, just ok.  The problem is I'm getting water automatically and have to get up to go to the bathroom a few times a night.  I have to haul the pole (see below) along with me, so it wakes me up.  The only two problems I have are:  my breathing is shallow and my lower back muscles hurt if I stand for very long, almost like they are getting ready to cramp.  The shallow breathing must have been an expected consequence of surgery since they gave me a device to measure how much breath I could take in and told me to work on increasing it.  Why the back muscles seem to be cramping, I do not know.

The Pole, the Pump, and the Feeding Tube
The formula,"Jevity 1.5", and water are pumped directly into my upper intestine.  The formula is pumped at a rate of 90ml/hour.  90 ml is not that much.  The formula and water are hanging in bags off a 5-1/2 foot pole.  The pump is a little blue box, "the Kangaroo Joey", that is also attached to the pole:

If you look carefully you'll see a small tube dropping down out of the middle of my sweatshirt.  You cannot see the entire tube, but the other end comes back up and into the pump, between the black power cord and the pole.

Martha is the expert on setting up the pump each day.  She has been my hero. She learned it how to operate the pump at the hospital from one of the nurses who was really helpful (Sabra).  Martha sets the pump on totally automatic - it switches back and forth between food and water.  All we have to do is make sure the bags do not get empty.  Martha does all of that also, except in the early morning I top off the bags.

The tube from the pump connects to the feeding tube which was surgically placed in my abdomen:

My hand is holding near the end of the tube from the pump.  That purple thing at is kind of like a nozzle that fits into the feeding tube.  The feeding tube is the sort-of-Y-shaped gizmo that says "JEJUNAL" on the side.  For the 6 hours or so when I'm detached from the pump, I just tuck that small tube including the Y-shaped gizmo in my shirt.

Going Home Tomorrow

Wednesday Evening.

I am leaving the hospital and going home tomorrow.  We're outta here at 12:00 noon.  There is a lot of anxiety about what feeding tube/pump we'll have at home.  The home-care company that my insurance company contracts with does not supply the same exact pump that we've learned on here.  My doctor has prescribed 18 hours on the pump and 6 hours off every day.  I'll be receiving 92 ml of food an hour for a total of 2300 calories per day.  The Jejunostomy feeding tube is very narrow, I'm guessing about ~3/16" diameter on the outside and at least half of that diameter is tube wall.

We've been getting contact info so if anything goes wrong at home we have people to call.  We have to worry about all meds we're getting because nothing can be taken through the mouth for 3-1/2 weeks, everything have to go through the feeding tube.  If available, we get elixers (like Children's Tylenol), if not we have to get pills we can grind down into very small powders, then dissolve in water, then manually push it with a big syringe into the tube.

As I said: 3-1/2 weeks.  I hope I can make it.

The nurses and the doctors (and Powell) have all said I am doing great.  I walk at least 5 or 6 times a day around the loop on this floor.  Today I started walking up stairs.  The first time I did 1-1/2 flights and was getting winded.  My nurse stopped me as she got nervous.  The second time I made it up 2 flights of stairs and was definitely panting.  We took the elevator down.

Powell has been in every morning this week to visit.  Lori came with him yesterday.  It is good having visitors.  Julia (my niece, Powell and Lori's oldest daughter) came by for a while today.  She got here about about 5 min. after her Dad left.  Julia was really dressed up because she was going to an interview when she left.  Every night my family comes by.  Martha's friend Stephanie Quirk came by one night and Caroline's friend Devon came by.

Some Visitors

Martha, Steph, Paul and Amy

Dave and Veda

Surgery: day 4 post op

Written by powell

Sam is in good spirits.  He was reading stuff on the internet when I walked in.  He self administered pain meds 3 times today.  He could be taking 4/hour so he seems to be doing well.
o 6:30am to get out of bed
o 9:00am before the walk (was not in pain just anticipating it)
o 11:30am after getting back into bed, sore back.

Sam took three laps.  No problem, no pain.

The Dr. said best case, absolute best everything goes perfect, could be three more days in the hospital (anticipating longer).  Food tube is delivering 15cc/hour and just got upped to 30cc/hour.   Hard to tell how well the food consumption is going, no diarrhea - good,  no poop - bad.

Sam is hungry.  Not even a drink of water is allowed.


Go Shockers:

Surgery Recovery, Day 3 - Evening

This is Caroline.

Dad obviously posted the earlier post, and gave you a clear overview of the morning and early afternoon.

He had his first guests this afternoon.
He has been talking more (than yesterday) to my mom, Kevin and I, and watching college football.

He walked around the floor a few more times than yesterday, and is actually getting ready to go on another walk with the evening nurse (whom has been his nurse for the past two nights). Real Time: They just made one loop and he passed the room saying he wanted to make a second loop, and they are off...This is the first time he has completed two loops of the floor. The nurse claims the floor loop is 1/15 of a mile.

He is still commenting on his breath and noticing the difference of breathing post surgery than before surgery when he did not think about breathing. Dad has now returned and he and the nurse are talking about breathing...He especially notices it when he gets in and out of bed and when he sits down in the chair or gets back in bed after walking. He is also on the same drug that he can dispense himself, and it sounds like the nurse might give him some Tylenol to help with how he feels at certain times when he is breathing.

Not that dad has paid attention, but I think the view could be worse...The image below is looking west.

Surgery Recovery, Day 3

I've been moved to room 740 in the Cancer Tower at Portland Providence.  Exit 3 off of I-84 then head back west on Glisan to 47th.  The easy access is from 47th, just south if I-84.

I am alert enough to sit at a computer and type in my blog for a while.  The picture that Caroline posted yesterday shows Dr. Christy Dunst, my primary surgeon, and Dr. Radu Peskaro who is a fellow under Dr. Dunst's tutelage.  He can write orders.   He came by this morning and said it is time to get onto the feeding tube.  We begin with 15 ml /hour.  If everything goes well, it will ramp up over time to 100ml/hour.  So far, the only "feeding" I've had is from saline IV's.

I took a walk last night around 12:30a when I woke up with a headache and was feeling kind of lousy.  That walk was very short, after about 40 feet we turned around and came back.  I felt worse.  This morning at 8:00a I walked around a loop that might have been 60-80 yards total.  I'm feeling better and planning on doing that again in about 20 minutes.  Then a sponge bath.  Then I'll get back in bed and hope that I haven't over done it.  I know that if I've done too much I'll feel bad.  On the other hand, when a slow walk of 80 yards is overdoing it you realize how much much further you have to go.

The doctors have thankfully removed a lot of tubes that were connected when I came out of ICU.  There was a tube through my nose into my stomach to suction out any stomach contents.  That really irritated my throat, which was incredibly sore for two additional reasons: (1) the breathing tube and ventilator and (2) the main incision through which the operation was performed was high up on my throat.   Here is the incision in my throat, you may have to blow it up:

They removed the bladder catheter.  They like to remove those as soon as possible because they are primary source of infection.  I was under anesthesia when they put it in.  It felt really weird coming out like it kind of hurt, but when it was out I felt fine.  I was very nervous about the first time I urinated without the catheter, but had no burning.  Since it is difficult for me to get in and out of bed, they give me a "urinal" (which is kind of like an empty plastic milk bottle) which I use while in bed.  Guys have it a lot easier then girls.

They removed two IVs from my right wrist, one was arterial. I'm getting all IV stuff through the one in my neck, which everyone refers to as "a main line".

Finally they gave me this breath quantity measuring device to help me improve my lung capacity.  As I breath in, beyond a certain point it really hurts, due to the surgery.  Here's a picture:

Surgery: Status Update - 7:45 PM PT / 9.13.13

This is Caroline.

It is 7:00 which means the nurse change is currently happening in the room. The new nurse is his same nurse as last night. She is very friendly. In the midst of the change, the surgeon stopped by for about 15 minutes to check on Dad. Both times, I have seen her, she has been quite upbeat and friendly. The photo below is the of the surgeon and the man is on a fellowship with the doctor. This was the most upbeat and talkative Dad was all day, today.

He took another walk, which is encouraging. The doctor wants him to walk and breathe into a small box (where when you breathe a small ball moves. The object is to get the ball as high as possible).

Otherwise, not much has happened since a few hours ago...

Surgery: Status Update - 5:45 PM PT / 9.13.13

This is Caroline.

Not much knew has happened or changed since I last wrote, except my dad appears to be sound asleep. We are hoping he can sleep for a while, or at least until the next nurse arrives...

They did up the medicine he can dispense himself to double the amount (since he was not taking it enough as he should have been the past 24 hours), so I am convinced that is making him extra drowsy and sleepy.

I will post a final update later...In the meantime, it's Friday, and past 5:00 PM everywhere in the US (except Hawaii), so if you happen to be enjoying a beer or cocktail, I encourage you to have an extra for my dad...

Surgery: Status Update - 1:45 PM PT / 9.13.13

This is Caroline.

Pain is still quite high and he seems a bit out of it today. Per the picture I posted last night, that smile is definitely not on his face today. He did sleep somewhere between 2 - 4 hours last night; however, the nurses do not document this piece of data, so we do not know for sure the exact number of hours. I am in the room and he is napping at the moment.

Earlier, he was very slowly walking around with the nurse. They are trying to make him walk every so often. He also used the bathroom.

They have been encouraging him to take the medicine in which he can dispense; yet, he is hesitant at times because it makes him feel drowsy. He is taking the medicine. Per what the nurses are saying, he could probably be taking more.

He would like to have glass of water, but he cannot swallow anything until, tomorrow (Saturday). The only thing "food wise" going into his body is something with salt through an IV that has zero calories.

Surgery: Status Update - 10:30 PM PT / 9.12.13

This is Caroline.

A few updates:

• Pain was a word we heard several times from my dad. Per my earlier post, he is now hooked up to some powerful drug in which he is able to dispense to himself once every ten minutes (if needed). The amount is programmed into a machine and when he needs the medicine he clicks a button. The nurse assured him that there is no way he could overdose. The epidural that I also mentioned today, did not take, in which allowed him to feel much pain in his abdomen this morning. The anesthesiologist that was with him during surgery, stopped by this afternoon and confirmed that in fact the epidural did not take.

His surgeon also stopped by this afternoon and removed a few items...

• The catheter - An item that has been known to cause infections (specifically staph infections). They were going to give him a bucket type thing to pee in later tonight, so he would not have to walk to the bathroom the next few hours.
• The tube in his noise that was bothering him last night, was removed - He was quite pleased about this going away.

Additionally...

• His throat is still quite bothersome (despite some items having been removed)...the three main items causing the pain: nose tube (which was removed), breathing tube ventilator (in which was placed in his throat during the surgery), and a mini tube that is running through his neck (still in place).
• They helped him get out of bed (the first time since before surgery) and he sat in a big, La-Z-Boy-like chair that is next to the bed. He also spent approximately 4 hours total walking around the nurses station. He said it felt good to walk around for a few minutes at a time.
• Dad is very, very tired. Since post-surgery, he has received only 40 minutes of sleep. We left around 8:30 this evening, and he was hoping to get some sleep, tonight.

To lighten things up a bit, the nurse this evening mentioned, "I am glad he is making jokes, despite being uncomfortable and in pain!"

*Still, no visitors are allowed. Once I get confirmation that people can visit and that my dad is OK with people visiting, I will post a quick post, as I know a few of you have been asking when you can visit (I would be the same way). I have a hunch it will be late this weekend. Yesterday was the surgery and today/tomorrow the nurses want to ensure he does not get an infection. On top of that, dad is hoping to sleep most of tomorrow and perhaps Saturday.

Surgery: Status Update - 3:00 PM PT / 9.12.13

This is Caroline.

Dad is still in the CICU and the pain is in full affect.

The epidural is no longer working, so around 2:00 PM they gave him a new drug to help ease the pain. They were also going to let him get out of the bed for a few minutes, as he has been lying flat since the surgery started yesterday morning.

He is talking, but his throat hurts like 'heck.'  It sounds like there is one drug that after he takes it, it helps ease the pain associated with the sore throat.

We are trying to not make him talk too much, as talking makes it worse.

He also mentioned pain in his abdomen area, due to the movement of so many body parts and the overall surgery.

He is also very sleep deprived and has not slept since before the surgery, or I suppose during the surgery. The nurse comes in to check on him approximately every 45 minutes, and there are a lot of people (nurses and doctors) and noises, in the CICU area, and also the fact that he is on his back. He never sleeps on his back, so being on his back, alone is not comforting. He is looking forward to when he can move into a more permanent, quieter room. It sounds like within the next day or two the move will take place.

On a more encouraging note, one of the doctors stopped by this morning and told him the surgery went very well.

Will post another update this evening...

Surgery: Status Update - 9:45 PM PT / 9.11.13

This is Caroline.

We heard the doctor say CCU, it is actually the CICU where my dad will be until at least through tomorrow. 

After I wrote the last post, Paul, Martha, and I were able to see Sam/Dad.

He was awake, knew who we all were, and seemed very literate. We had been informed a while back that he would be completely out of it and would not be speaking. He showed us where he was in pain – The nurse was in the midst of getting an epidural ready. He has a lot of IV's in him (as expected) including a catheter to pee and feeding tube, to feed him. There is a tube in his noise that he said was quite annoying. 

He did not look swollen (as we had previously been informed) and much different, aside from several tubes, IV's, and about a 4-inch incision on the left-hand side of his neck. His face is a bit pale in color. The other incisions are not visible when simply looking at him. The nurse could not believe at how alert he was after this specific surgery. She said patients are rarely smiling, and talking a few hours later. 

Typical Quiring male, they needed to increase the length of his bed, as it was a bit short.

We stayed in the room for about 30 minutes, and then it was a shift change, so we went to the cafeteria in the basement and came back up around 8:00 and said good night. Martha stayed a bit longer than Paul and I.

So far, he is recovering well.

Surgery: Status Update - 5:30 PM PT / 9.11.13

This is Caroline.

The surgery was complete about 45 minutes ago 4:45 PM PT.

Paul, Martha, and I just met with the surgeon.
She seemed very upbeat and said everything went well, and that his body is responding well to the surgery.

He will be transferred to CCU within the next hour. He will be in the CCU for at least one day.
*No visitors are allowed at this time. We will let everyone know when people can visit. It sounds like it will be a few days before people can visit (they do not want to risk an infection).

We cannot thank everyone enough for your thoughts and prayers the past few months, weeks, today, and the next several days...

Surgery: Status Update - 3:30 PM PT / 9.11.13

This is Caroline -

The surgery began at 9:15/9:30 AM PT.
Mom just received an update from the operating room saying that everything is progressing nicely.

I believe there is around 2 - 3 more hours left.

Paul or I will post an update later this evening.

The Night Before Surgery

Sept. 10, 2013.

According to the instruction sheet in the mail, I am scheduled for: Laparoscopic Transhiatal Esophagectomy and Feeding Jejunostomy Tube Placement.  Say that five times really fast.  I just double-checked and all those words are spelled exactly like the instruction sheet.

Before going any further, I want to thank everyone who has wished me well, sent me email, called, sent a card, and told me that Martha and I are in their prayers.  I am humbled that so many good people are thinking about us.

The anesthesiologist just called me at 9:00 pm to go over what's going to happen tomorrow.  I could have used a lot less detail.  I'm going to get an epidural high up on my back that will provide good pain relief.  It will be in place for a few days.  I'll have many other wires and tubes, including a catheter through the urethra into the bladder.  I'll have an IV in my neck.  He went on and on.  Every time he used the words "discomfort", "some discomfort", etc. I chuckled and so did he.  I don't think I'll be chuckling when I am experiencing the discomfort.

We have to be at the hospital at 6:00 am.  I'll be put under a general anesthetic around 8:30.  Martha will have to endure the waiting room without the help of medication.  She will be joined by Caroline, Paul, and Kevin as the day progresses.  I hope they can keep each other in good spirits.  I am guessing surgery will take until 5:00 pm then an hour in the recovery room, then they wheel me into the ICU for the night.  Emphasis on "guess".

The anesthesiologist said that I will have a breathing tube (ventilator) during surgery.  They hope to remove it at the end of surgery, but there can be many factors that would make it better to leave it in until the next morning.  He emphasized that my family should not be alarmed if this happens.  As long as the ventilator is in, I'll be under full anesthesia.

For the last three to four weeks I have felt great.  I have gained enough weight that I've had to start watching what I eat.  Everything tastes great.  Well almost. I've started eating my usual breakfast of Fiber One cereal.  It doesn't taste that great.  Barbecue Rigs?  Great. Pizza?  Great.  Chips and salsa?  Great.  And finally beer has started tasting normal again, which is great.

I maxed out with worry and stress over the surgery about three weeks ago.  I think that numbed my brain so I'm not very anxious any more.  The human brain is amazing.  Talking to the Anesthesiologist made me a little anxious (I felt some discomfort) but even that faded quickly.  I hope I adapt as well to the actual circumstances.