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...