Baby Steps

Larry continues to make small improvements each day.  He spends all day and all night in his recliner - the best place for him since he is supposed to keep his head and chest elevated.  I spent the first couple nights on the couch in the next room.  Stephen and Mike found a buzzer from one of their board games - Larry uses it to call me in the middle of the night - works great!  So, now I've moved to the bedroom.

My goal is to get him up more often to walk around the house and to start reducing the amount of pain medication he is taking.  His goal is to be able to go to church next weekend!

Yesterday, I picked up the dog (Buddy) from the kennel and took him to the groomer for a good bath.  He was so happy to see us when he finally got home. 

Things are slowly returning to "normal" or as normal as they can be for now.  Although, Mike, Stephen and I are struggling with eating - we feel guilty eating when Larry cannot.  It will be several weeks before Larry can start drinking and eating.  The hospital coached us on how to start introducing liquids and solids - a two week process before he will be completely weaned from the feeding tube.  Looking forward to the day the doctor gives us the OK to start the process.

The first follow-up appointment with the surgeon and oncologist is April 4.  At that appointment, I expect Larry to be scheduled for the "scope" a few weeks later.  They will send a camera down his throat (while he is heavily sedated) to check that everything is healing properly.  The results will determine when Larry can start drinking/eating.

Thank you all for your continued prayers, support, cards, calls, e-mails, blog comments, etc.  Much appreciated.

Pat

Getting Settled

Yesterday was exhausting for both Larry and me.  The drive home was uneventful.  We met Larry's brother at the halfway point - the hospital strongly urged him to get out and walk at least once on the way home and I asked Larry's brother to meet us to help Larry out of the van.  The other suggestion made by the hospital was that Larry ride in the back seat for at least a week - front seat airbag deployment could cause problems.

While we were in transit, the medical supply company called to confirm delivery.  My dad and Stephen were at the house to accept delivery of boxes and boxes of supplies.

We got home and got Larry settled into his chair and 30 minutes later the visiting nurse came to the house.  She made her assessment and watched me set-up and start the feeding pump.  She spent about 45 minutes at the house - Larry slept through most of it!  She or another nurse will visit twice per week for 3 weeks.

The boys helped me get the car unloaded. Our living room was a sea of luggage and medical supplies!  Where to begin?

Mike told me that his ear started hurting after school yesterday.  It got worse through the evening.  At 9:30, I took him over to Flower ER to confirm an ear infection and prescribe antibiotic.  After a drive across town to a 24 hour pharmacy, we were back home by midnight.  He's much better today - mostly because of the medicine but partly because he got a day off from school!  I put him to work helping me get things put away.

Larry is feeling better today.  Still in a lot of pain, but it seems to be better than yesterday.  A nurse from Cleveland Clinic called today to help me with a medication schedule.  That was a huge help.

My mom came over this afternoon to help - not everything is in it's place, but we're getting there.  THANKS, MOM!

Pat

HOME !!!

We're home and happy to be here.  Busy getting settled in.  More later.

Ready for Discharge

Larry had a good night and is ready to head home.  I'm checked out of Hope Lodge.  Were in the hospital room waiting for discharge instructions and any remaining training required for home care. 

Pete and Laurie visited yesterday afternoon.  While they were in the room, the surgeon walked in.  He recognized Pete after 5 years!  Amazing memory.  Good to see Laurie and Pete - our wonderful angels.

Dave, a college buddy, stopped by shortly after Pete and Laurie left.  The guys had fun reminiscing about their college days.

Yesterday was also a heavy mail day - 12 cards delivered!  Thanks to all.

Nurse Tom (our favorite) just stopped in.  He wants Larry to have a last dose of painkiller for the ride home - so noon is the time.  Looking forward to getting home.

Pat

Jerry & Shirley

We join the staff in mourning the loss of Jerry, the patient down the hall who had the same surgery four days before Larry.  Jerry died this morning from complications from a previous surgery.  He had surgery yesterday to repair the issue and did well overnight in ICU.  Details from this morning are confidential and were not shared with us.

I walked past his room several times this morning to see if he was back in the room.  When I saw an unfamiliar family member packing his things, I had a bad feeling.  I asked a nurse if Jerry was coming back to the floor - she directed me to the front desk.  I knew. 

Shortly after that, Shirley stopped by to share the sad news.  What a strong woman.  Just hours after Jerry's passing, she wanted to see Larry to wish him well in his recovery.  Jerry was such a cheerleader for Larry, encouraging him to get out in the hall to walk.  And Shirley was such a comfort - we shared many hugs. 

Pat

Praise God!

Pathology report came back and the news is very good.  All lymph nodes are clean and the margins are clear (meaning that all cancer was removed).  Based on the findings, staging has changed to Stage I .  There are many other words in the report that we don't understand - but it was very clear that the surgeon was very pleased and glad to deliver the good news. 

What a wonderful anniversary gift - 25 years today!

Pain is still pretty intense, but better than yesterday.  We'll get him up for a walk soon.

Still planning on noon discharge tomorrow.  But we will be going straight home from the hospital.  Logistics of staying in town were difficult - delivery of supplies and home nurse.  It will be so nice to be back home.

Pat

Pain and a New View

One of the things removed today was the epidural (an IV in the mid-back that created a band of numbness around the mid-section).  A couple hours later the pain started - the first real pain from surgical site.  He's been miserable all day.  The pain management team added one more medication (total of 4 meds for pain) - once that kicks in, they think he'll get relief.  The hospital staff is working very hard to control the pain - they know he will be more mobile when there is less pain and mobility is so important for recovery.

The only walk he got in after the pain started was a walk to his new room.  We're not sure why we were moved when we plan on leaving soon, but we had no choice.  The room has a better view, but it was a very slow walk getting Larry down the hall.  Another bonus, the new room is at the end of the hall so should be much quieter. 

Tube Count

The tube count is down significantly today.  Four tubes removed this morning and another scheduled for later today.  The most annoying tube was the first removed - the NG tube that went in the nose and down the back of the throat.  It really restricted his movement.  By the end of the day, he'll be left with the feeding tube, one small drain tube, an IV going into the central port, and the heart monitor.

I've lost my job administering medication through the feeding tube.  Not because I did anything wrong but because they want Larry to learn how to do it.  His first training was this morning - he did great.

Target discharge day is Wednesday - post-op day 9 - FANTASTIC!!  We plan to stay in town Wednesday night and head home Thursday after rush hour. 

Larry enjoyed visits from his family on Saturday and from my parents, Mike and Stephen yesterday.  The boys were able to escort him on one of his walks.

To answer questions from Dave and Pete -

• Yes - Larry has been watching NCAA basketball
• Lap - 170 steps for me - so maybe 350 feet

Pat

Steady Progress

Larry continues to make steady progress.  He did 2 laps on his morning walk and 1 lap for the mid-afternoon walk.  Planning another walk before the shift change at 7:00. 

One big tube removed today.  Monday at least two more will be removed.  Lungs are clearing up.  Everything is moving in the right direction.

If progress continues at this rate, then Larry could be discharged as early as Wednesday! 

Pat

1st Full Lap!!!

Not much sleep last night, so Larry's pretty tired this morning.  Tube count remains the same.  He may lose one of the chest drains tomorrow and may lose the oxygen later today, but I think Monday will be the big day for tube removal.  That's the day the most annoying tube comes out - the NG tube that is in his nose.

Still some fluid in the lungs - so aggressive respiratory therapy continues.  Pain seems to be well managed - I'm getting pretty good at giving meds through the feeding tube.

The best news - Larry needed less help getting up for a walk and once he got out in the hall he moved with more speed and confidence.  He made a full lap around the floor.  GREAT JOB LARRY!!!!  Goal is five more good walks today. 

Larry's family is coming to visit today and my parents are coming with Stephen and Mike tomorrow.

Looks like we're in for a good day! 

Pat

Two Steps Forward - One Step Back

Not such a good day today.  I was here at 7:30 - Larry was sleeping as expected.  The nurse helped get him to his chair, but he continued to sleep.  Seemed too sleepy and not as alert as yesterday.  This went on all morning.  Adjustments were made in the pain medications and by mid-afternoon he was feeling better.

Pete and Laurie stopped in when Larry was feeling pretty bad - perfect timing to give me a much needed hug and wipe away a few tears.  While they were here, I introduced them to Jerry down the hall who had the same surgery last Thursday.  Sounds like they got along great and are planning an esophagectomy reunion later this summer after Larry and Jerry recover!  By the time Pete and Laurie stopped by the room again, Larry was feeling better.

Larry got out of the room for a short walk around 6:30 and will get another short walk at 9:30.  Sounds great, but the goal is 6 walks per day with each one being a "lap" around the ward (past 25 rooms).  So much progress to be made.

No tubes removed today.  Hoping to get rid of the annoying NG tube sometime during the weekend.

Thanks for your continued prayers for healing.

Pat

Nurse Pat

Wow - so much has happened in the past 24+ hours - almost all good. 

• Larry was moved from ICU to the step-down unit yesterday at 11:00 am (moved by my buddy Prentis the hugger)
• See my earlier post (2 down I think) for the mailing address
• Several tubes have been removed - I think we're down to 10 (from 18)
• Biggest risk now is pneumonia - so many visits from respiratory therapy and encouraged use of the "pickle" device
• Dr. Rice (surgeon) introduced us to Jerry down the hall - he had the same surgery 4 days before Larry - he's up and walking the halls
• Two physical therapists were here early this afternoon to assess Larry and get him up and walking; first walk - 35-40 feet - Larry could have done more, but they didn't want him to over do it; goal is to eventually take 6 walks every day
• PTs will try to get back today to get Larry walking again (I promised them some NCAA basketball when they came back)
• Dr. Adelstein (oncologist) visited and said surgery went well; they are waiting for pathology results from the surgery; won't be available until next week
• Feeding tube is now being used for feeding (was being used for drainage then saline)
• I am being trained to administer medication through the feeding tube - showed me twice, then had me do it once.  Pump off, clamp, remove tube, unclamp, flush, meds, flush, clamp, replace tube, unclamp, pump on.  I think I've got it.  They will have me administering medications from now on.  Just call me Nurse Pat!

I've been here since early morning - the day has flown by - feels like it's been only a couple hours.  Larry's pain seems to be better.  He's awake more through the day (even though he got very little sleep last night).  Every day is a better day. 

A case manager was in to talk about home care.  Does anyone have experience with any Toledo-area home nursing agencies?  If you can recommend any please post a comment or send me an e-mail to larryandpat@bex.net. 

Thanks!
Pat

Two Views

The view from Larry's room.

The view from my room.

Mailing Address

Cards can be sent to Larry at this address:

J5-2 Bed 05
Thoracic Surgery Stepdown
9500 Euclid Ave / J5-2
Cleveland OH  44195

Any cards received after he is discharged will be returned to sender.  Typical stay is 10 to 14 days, so we'll be here for at least 7 more days.

Pat

Moving Day!!!

Larry is sitting up in a chair this morning!!!!!  And watching TV.  The nurse said he had a good night.  He says he didn't sleep well.  The thoracic team did their rounds today and were pleased with his progress.  Dressings were removed from his two incisions - one in the neck (~3-4") and one in the abdomen (~14").  No stitches - everything is glued together.

They will be moving Larry to the step-down unit later today!!!!!  No more ICU after today.  That also means less laying around and more getting up and moving.

Yesterday, one of the staff in the ICU unit caught me tearing up as I left - his name is Prentis.  He gave me a big hug and some words of encouragement.  I saw him today and asked for my morning hug - he happily delivered with more words of encouragement.  Very nice.  Larry has had the same day nurse yesterday and today - Caitlin.  Also very nice.  Kudos to the great staff here.

Today is moving day for me also.  I'm checking out of the hotel and moving to the Hope Lodge.

Pat

Tubes Everywhere

So, the sitting up thing didn't work out.  They got him on his feet and his blood pressure started to drop.  Back to bed.  This is not really a setback for what he's been through.  They will increase his fluids and try again tomorrow.

Before surgery, Larry asked me to take a picture of him in ICU while he was hooked up to the maximum number of tubes.  Sorry, Larry - no photos allowed.  So instead, on my last visit, I worked on a tube count.  Counting the 2 that have been removed, he had 18 tubes/wires pumping things in, draining things out or monitoring vital signs.

We will celebrate the removal of every one of them - so let's hear a belated HOORAY for the removal of the ventilator and one IV line.  Two down, 16 to go!

Pat

Sitting Up

Larry has been making steady progress all day.  For all he's been through, he looks pretty good.  Pain management seems to be better.  Respiratory therapy has been working with him.  With every visit he seems more alert.  He has recognized all visitors today, he knows that surgery went well, just confusion about what day it is.  I've been limiting my visits to just a few minutes every hour.  I want to give him every chance to sleep.  The nurse was planning on getting him up in a chair at 5:00.  She said it would take some time to get him situated with all the tubes.  I'm heading down there now to check his status.  The fact that they are getting him out of bed less than 24 hours after surgery is excellent progress.

Bill & Kelly (Larry's brother and niece) left for Chicago around noon today.  That left Mike, Stephen and I to spend some time together.  We hung out in the ICU waiting room, visiting Larry periodically.  Dave & Carol (Larry's other brother) arrived this afternoon.  After a short visit with Larry, they took the boys home.  They plan to stop in Huron for pizza.

After everyone left, I asked the concierge where to find the most comfortable lounge.  He sent me to the rooftop pavilion.  So here I am looking out toward downtown Cleveland.  I was up here yesterday for a few minutes while waiting for surgery.  See photo below from yesterday when the weather was better.  So the rooftop was quiet and relaxing until a yoga group started right next to me.  I am hearing things like "downward dog," "triangle," "cobra," "table," and "warrior."  Clearly, I'm not familiar with anything yoga related.  At least they have good background music - The Beatles.


This will be my last post of the day, unless there is significant news to share.  I'm expecting that after sitting up, he'll just want to sleep and the night will be quiet (as quiet as a hospital can be) and uneventful night.

Pat

Quiet Night - Good Morning

We got to see Larry at 10:30 last night after they got him settled into the ICU after surgery.  It was hard to see him on the ventilator, but other than that, he looked better than I expected.  After we all saw him we all went back to the hotel. 

I called to check on Larry at 3:30 am - I was happy to receive a boring report - "doing well - no changes".

Morning visitation doesn't start until 8:30.  I called at 8:00 (after shift change) - GREAT NEWS - they were working on taking him off the ventilator!  This can take some time while they wake him up - check blood oxygen - all to ensure he can breathe on his own.  By 9:00, I was able to go back to see him.

One tube down - many still attached.  He's very groggy, but I was able to tell him the surgery went well and that the family was able to see him last night.  Pain is an issue right now - they are working on getting the right balance of pain medication. 

Some of the family went home last night or early this morning.  As I write this, I'm here with Stephen, Mike, Larry's brother and our niece.  Later today another brother will be here to visit and take the boys home.  I'll be staying at the hotel across the street until Larry is out of ICU, then I'll move down the road to the Hope Lodge.

I feel so blessed to have you all supporting and praying for Larry.  I feel wrapped in a blanket of love!

We give God thanks and praise.

Pat

OUT OF SURGERY!!!!!

Larry is out of surgery and in the intensive care unit.  We are waiting for his nurse to take us back to see him (2 at a time for just a few minutes).  The surgeon said everything went as expected.  How long Larry stays in ICU will depend on how he recovers over the next few days.  Once we all get a quick visit with Larry, we'll call it a night and go back to the hotel.  We can't come back in the morning until 8:30.  I'll post an update after I see him in the morning.

Prayers have been answered.  Continued prayers for a good recovery.  Thank you all for your prayers.

Pat

5:15 Update

Got the page - surgery is underway.  Could be 4-6 hours before we hear more.

Pat

5:00 Update

Latest update - even though they took Larry to the surgery floor at 1:00, he did not get into the OR until 3:15.  He is still being prepped.  I am waiting for the page that says "procedure started".  It's unclear how long the actual surgery will take.  The folks at the waiting room desk don't seem to know if the 6-8 hour estimated time was for the surgery itself or if it includes the few hours of prep time.  Will post again when I know more.

For now praying and waiting.

Pat

3:00 Update

Larry was taken up to surgery at 1:00, he was in good spirits when they wheeled him away.  Many tears from the other 14 of us.  No updates from the surgery floor, but I don't expect any yet.  No news is good news. 

My lost backpack was delivered at 1:00 - thank you Diane!  Now I can upload a few photos.

Larry, Stephen and Mike with one of their wins.

Larry and Family

Jamie (4th Angel Coordintor), Laurie andPete

Delays...

We're here at the hospital in the surgical waiting room doing what it was meant for WAITING.  They told us to be here at 8:00 for 9:00 surgery.  Shortly after we arrived, it was delayed from 8:00 to 10:00, then to 11:00.  We have our own little room of the larger waiting room - seats for all of us and a huge TV on the wall.  There are 14 of us here to support Larry - we are surrounded by LOVE!

To prep for surgery, Larry had to go on a liquid diet starting Saturday.  He won't have solid food for 6-8 weeks.  For his "last meal" he chose steak at Outback Steakhouse.  We went to mass at St. Joe's on Saturday and service at Sylvania UCC on Sunday.  After service, my parents joined us for a private prayer offered by our Senior and Associate pastors.  Very comforting - many thanks to Bill and Luke!

We headed for Cleveland early Sunday afternoon and stopped at Dave & Busters on the way.  For those who don't know, it's an arcade / restaurant.  We all had fun.  Stephen and Mike won a few jackpots and cashed in their winnings for loads of candy!  Pixie Stix, Nerd Ropes, Fun Dip.  They'll be on a sugar high all day.

We arrived at the hotel at 5:30 where we met Larry's family - his parents, 4 siblings and their spouses, and two nieces.  We hung out in one of the rooms playing games and talking.  Now here we are WAITING.

Also with is our angel Pete and his wife Laurie.  Jamie stopped by to introduce herself - she is the coordinator of the 4th Angel program.  It was nice to put a face with the name.

I will be posting photos later today - not possible now because of a small mishap.  The backpack with my netbook (that has a camera card slot) was left at home.  My parents found it this morning and gave it to their neighbor who happens to be coming to Cleveland Clinic today for an appointment.  Weird how that all worked out.  Thanks Mom & Dad and Diane D.

I'll post again when Larry actually gets in for surgery.  It sounds like we won't get many updates.  So you may see a post that says surgery started then another several hours later when Larry is out of surgery.

Thank you all for you love, support and prayers. 

Pat

More good news!

The good news continued today:

• EKG - looks good
• Chest x-ray - looks good
• Blood work - looks good
• CT scan - shows that the cancer HAS NOT SPREAD
• Oncologist visit - everything looks good - released for surgery
• Anesthesiology visit - everything looks good - OK'd for surgery
• Surgeon visit - everything looks good - ready for surgery

The cancer is now considered Stage II (instead of Stage III).

The surgeon's office did a nice job reviewing the surgery and what to expect after.  Larry will be in ICU for 24-48 hours, then moved to a private room.  Total hospital stay is expected to be 10-14 days.  Then home for recuperation.  Four to eight weeks after surgery, Larry will go back for a second round of chemo and radiation. 

Surgery is scheduled for Monday, March 14.  We won't know the time until Sunday evening. 

Pat

Fantastic News!!!!!

We're in Cleveland for pre-surgery testing.  Today Larry had two tests:  pulmonary function test and EGD/EUS.  The pulmonary function test checked the strength of his lungs.  He tested better than in January - probably due to his current status as a "non-smoker".  For the EGD/EUS Larry was given a strong sedative to knock him out.  They sent a camera down his esophagus to check the status of the tumor.  Great news - it is now half the size it was when diagnosed in December.  WOOOOHOOOO!!  There is no sign that it has spread beyond the esophagus. 

Tomorrow we have ten appointments:  CT scan, EKG, blood work, oncologist, surgeon, anesthesiologist, etc.  CT scan will validate that the cancer has not spread.  It will be a long day and we are hoping the news continues to be as good as the news from today.

We had a lovely dinner with our angel Pete and his wife, Laurie.  It was nice to be able to get to know them a little better and to talk about what to expect next week.  Little Italy was a great suggestion, Pete!

Look for an update after the appointments tomorrow.

Pat