Happy Easter

Happy Easter.

We are home and relaxing.  My goal was to make it to morning services, but that didn't happen.
1. I over slept, nothing like sleeping in your own bed.
2. Had to get Paul's food started, it ran out in the wee hours of morning.
3.  Paul really needed a haircut and shave, I don't mind the "Mountain man" look, but I like him better clean shaven.
and it just felt so good to lay in bed and have my husband next to me.

It is now 11:30 and I am finally sitting down to my breakfast.  I really need to work on getting a new schedule for us to be more productive.

Changed Paul's wound dressing as it was wet and seeping through the bandage.  I like when the hospital had the wound vac on, it kept it dry.  I will bring that up to the doctor as it seems to be seeping and I really don't feel good about a moist, seeping wound in the heat.  Seems to me a good place for bacteria to grow.  Might be a bit paranoid, but after everything Paul has gone through in the last 3 weeks, I really want things to stay as uneventful as possible.
Paul is on a feeding tube with food going in 20 hours a day.  He gets 4 hours off for doctor appointments or getting out of the house.  The traveling nurse said some people go out with their I.V. pole and food, but Paul wouldn't hear of doing that.  He is feeling better but tires very easy.  So a lot of relaxing and naps for him.

I have to get laundry done, run and get prescriptions filled and take a couple hours of "me" time, well, not really, but doing laundry and running a couple of errand will get me some time alone to think and reflect on our new journey in life.

Happy Easter.

Thank you for all your good thoughts and well wishes.

Jo and Paul

P.S.  There is no place like home!

Good Friday

It is indeed a Good Friday...
We are going home.
Paul is discharged from the hospital

Holy Thursday 2013

Paul is tolerating the J tube feeding well. They will be increasing it during the night and if all goes well we should be heading home tomorrow. Paul has not had a breath of fresh outside air in 23 days.  I know he will take a deep breath and delight in it!

We know that it is still a long road ahead.  We have the chemo/radiation therapy and the esophagectomy surgery to get through.  But this has given us an idea of how his body may or may not react in the future.  The next few weeks will be a learning experience for us both and we have renewed strength and spirit to face it head on.

Thank you all for everything.

Jo and Paul

Moving forward

This afternoon the doctor had ordered a X-ray with contrast, but a different type of X-ray, as the technician explained it was a video X-ray.  They had put a contrast solution into the J tube and had Paul move around.  When he laid on his right side, the solution made its way through the J tube.  It seems the problem was the way the tube was laying inside the jejunal intestine.  Arriving back at the room we were hopeful that the problem was solved and all Paul would have to do is position himself on his right side.  The radiologist came to the room to test the theory.  Not to be, nothing...
The doctor was called.

When the doctor assessed the situation, he decided to cut the anchor stitches and pull the tube out a few inches.  Low and behold, it worked.  Thank you God!  Paul sighed in relief of not needing another surgery.  The doctor taped it in place until they could gather the necessary stuff to do a bedside restitch.  I was fortunate enough to help the surgeon do the bedside procedure, well not really, I just moved the tube when he requested and flushed it three times during the stitching to make sure that it remained open.  I am a bit guarded in being completely relieved.  I will Happy Dance when we are discharged and on our way home.

Next step is the food solution.  Paul will be monitored for any adverse effects..... Nausea, cramping, vomiting and anything else that would cause concerns.  Paul's weight is down to 147, but we are hoping that once home and the feeding are given on a regular basis, his weight will return back to 160  -  165.

Doctor feels if all goes well we may be able to be home for Easter.  That is something I am looking
forward to.  I told the doctors that we had prayers and good energy being sent from over the pond in England, from Washington D.C to California,  across the upper and lower the Mid-west, from Canada to Mexico.    He smiled and nodded his head in affirmation.

Thank you all for your prayers, encouraging comments, cards, emails, and healing energy.

Hugs,
Jo and Paul

Wednesday morning

The J tube could not be used for nourishment last night as hoped.  Even after a thrid attempt to dislodge whatever the blockage is, iT is still clogged or as the P.A. said possibly kinked.   We are not sure why or how, but it is not usable.

We are waiting to hear what can be done to fix this newest stumbling block on the road to recovery.

Thank you for the prayers
Jo and Paul

Tuesday March 26, 2013

We are doing a Happy Dance.
NG tube has been removed from the nose.
Paul has been given the okay for small sips and a few ice chips to moisten the mouth.

We are now waiting for Rita, the RN who is going to work on unclogging the J tube.
If all goes well, the feeding will start,very slowly and be monitored very closely as a preparation to going home.

We miss all our friend at Caliente and are looking forward to returning home and to work.
Thank you for all the cards, they are now hanging in Paul's hospital room for him to see.

Jo

Monday March 25, 2013

Update on Paul....
This afternoon the doctor clamped off the NG tube in Paul's nose.  If all goes well and he doesn't experience any nausea during the night there is a good chance that it will be removed.  The doctors want to make sure things are "flowing south" before removing the NG tube, which means checking to see how much bile is in his stomach in the morning.

The nurses will also be checking on the J tube and will use a small brush inserted from the outside to clean away any thing that would be causing the clog.    If all goes well they will proceed with trying a feeding, which is the reason for getting the J tube.  It will take a couple of days, but it looks like Paul's body is finally accepting the changes and on the road to healing.

I will say one thing, I am I awe of Paul's oncologist from Ranch Mirage.  Dr. Driesbach called on Paul's cell phone to see how things are going because we had cancelled the last two appointments.  He was just checking in to see how Paul  was feeling.  He didn't know we are still at USC.

I did get a chance to go home and pick up our mail.  Thank you for all the beautiful "Get well" and "Thinking of you" cards.  Paul enjoyed reading every one of them.

Jo and Paul

Palm Sunday

Yesterday they removed the J tube drainage bag.  Yea, one more little achievement.  The drainage bag was put on to help relieve anything that would need to drain out and any air the that would accumulate in the intestines.

On a not so good note.... The doctor went to flush the J tube, which is Paul's feeding tube for the next few months until the esophagus is removed, and it is clogged.  She tried Coke and then Vinegar she even left the vinegar in for several hours and came back in the evening to try again.  she was here this morning and the J tube seems to have a little less resistance but is not opened enough or all the way to be used for feeding.  She will be back later as Paul needed to use the bathroom.  

On another good note, Paul has been walking and sitting in the chair more and more each day.  This is great as it helps the intestines do what they need to do, help the stomach secrete the correct fluids, keeps the legs and ankle from swelling  and it continues to help Paul feel better.  The wound vac will be cleaned and changed today, replacement of bandage and suction device.

  

I hope to make a trip home over the next few days to pick up mail and a few items needed here... Paul's houseshoes, laptop, another book to read, some yarn as I've used up all the yarn I had brought with me.  I may get more of Paul's blanket crocheted then I thought possible.

All these stumbling blocks that I am trying my hardest to look at as stepping stones.  

Hugs to all,

Jo and Paul

Saturday March 23rd Update on Paul

 

 


Paul is feeling and looking much better today.  He had a BM (bowel movement) yesterday and it looks like the body is on track to getting back to normal or at least as normal as can be at this stage of the process.  I have been doing Jeanie's "Happy Dance"

I washed his hair and even tried to trim his mustache and beard.  I think he is a bit unrecognizable at the moment for those who know him as clean shaven.

Getting up and walking more and more each day.  We are looking forward to the day when we can come home and get back to work.


Thanks for stopping by.

Jo and Paul

Thursday March 22, 2013

Doctors have put a Wound Vac on the opening in the belly.  Paul has an opening of 5 cm by 2 cm with a depth of 2-3 cm in the middle of the incision site  on his abdomen.   I find it very interesting that they can pack an open area of the body and cover it then use a small vaccum to draw out any air or fluids in order for it to heal. The miracle of modern medicine.

The doctors are a little concerned that Paul is not recuperating as quickly as they think he should be.  They don't have any answers of why his bowels have not woken up.  They said he is doing everything right, breathing exercises, walking, sitting up.  It is just a wait and see......

Grandson Gage continues to bring a smile to our faces with his visits.  He loves to play hide and seeker when Paul does his walks and delights us with his dancing to any music he hears.  He is a joy to us both.

We continue to hope to go home soon.  We know the next few months are going to be a bit rough but we have a strong community of family, friends and physicians who are all there to help us muddle though this.

Once again I can only offer my thanks to all who send us get well wishes and prayers.

Hugs,
Jo and Paul

Wednesday night update

The chest xray from this afternoon showed some fluid on the lungs.  There is a slight infection in the surgical site.  Both are being treated with antibioctics.

The good news is that the J tube placement is good and there is activity inside the bladder/bowels.

Paul sat up for several hours today and did a small bit of walking.

He should sleep well tonight.

Thank you all for the encouraging comments, the jokes and mostly for the continued prayers and outpouring support.

Jo and Paul

Quick Update

Paul had a fever last night and into the early morning hours and blood pressure was high.  The nurses and I gave him a cool wash down and they put ice packs under his arms to help cool the body.

Doctor ordered blood work, urinalysis, chest X-ray and a CT scan with contrast of the abdomen.  His previous white count was good.  We keeping getting mentally geared up to take a walk in the hall and someone else pops in to do something.  Oh well,  so goes our day.

One step at a time.....

Jo and Paul

Goal is set!

Paul is out of ICU and back in a regular room.   His output from both the kidneys/bladder and the stomach secretions are both good healthy colors.  His oxygen levels are consistently good. Blood pressure seems to have gone up with being moved  twice today but otherwise things are looking okay!   They had put us in a double room and then moved us to a private room.  I think the second move was because I will be staying in the room with him.  

We are praying for a complete and uneventful healing and recovery after this second surgery..  Paul looked at the Patient Board in the room where they put in the days date, nurses name and other pertinent information for the room.  One line on it has "Patient Goals", Paul said his goal is to get better and go home.  I' m all for that!

We anticipate a couple more days before the bowls "wake-up", at least that is how the surgeon put it. Then I guess they'll try the J tube feeding again and wait to see if everything progresses as it should.  I have no idea what the time frame will be.

I feel a couple of really good things have come from all this....
The doctors will already have knowledge of how Paul's body can react to surgery.
We now know some of the staff that we will be dealing with when Paul has the esophagectomy both in and out of ICU.
We will know what to bring for a two week or longer stay.
We can already anticipate some of the set backs that can happen and not be totally surprised.

Thank you for the continued prayers and well wishes.  
We both are in awe of all the praying nd good energy coming our way.

Jo and Paul 

Monday, Monday.....

Paul is still in ICU.

Doctor wants to keep him in ICU to monitor his progress closely.

He sat up today for several hours and walked the hall in ICU.  Paul is doing better this time around then he was after the first surgery.  Doctor said it will probably be Wednesday before his bowels wake up and then they need to see if the replacement position for the J tube will work.  Paul still has the NG tube in his nose going to the stomach, draining away any bile secretions that build up.   He is receiving nurishment through a PICC line going up through his arm into a big vein in his chest.  Paul is avoiding using the morphiene as much as possible to prevent the bowels from becoming to lazy.

That's the update for today.  We are so ready to get out of here and get home to start the next phase of treatment.

Thank you for the prayers and well wishes.

Jo and Paul

Happy Saint Patrick's Day

We are doing well.  Paul actually sat up for a few hours and walked the hall in ICU.  He is doing so much better.  The doctors did have to make a bigger insicion and had to use 20 staples to close hon up.  The J tube has not been tested yet, but we are not in a hurry this time.  Taking it easy and slow.
Paul has brightened my Saint Patrick's Day with having greenish bile coming from the NG tube.  This is really a cause for celebration as up to now it has been brownish black!

This seems to be the month of unusual celebrations for us...

Looking forward to being transferred out of ICU tomorrow if all stays uneventful through the night.

Thanks again for the Get Well wishes and Prayers.

Jo and Paul

Out of surgery

Paul is out of surgery.
He will be going to ICU.
The bowel obstruction was caused by the J tube being placed too low.
Abdomen flushed with antibiotics.
If everything goes well, home in a week to a week and a half.

Thank you for the prayers.
God is good, prayers answered.

Jo

Second Time's a Charm?

Paul is scheduled to have surgery to correct a bowel obstruction tomorrow morning at 8:30 am.

With all the problems of the brownish stomach secretions and the bowels not doing the job the doctor ordered a CT scan yesterday night after checking Paul's vitals, input/output and the drainage from the surgical site on the abdomen.  The CT scan showed something is not right.  The upper bowels are dilated then collapsed.  The doctor also does not like the amount of fluid draining from the  surgical site, he said it is way too much to be a seroma.  Doctor said they have given everything more then enough time to correct itself, calm down and become functional now it is time for intervention and to open him up and look around to see what is going on.  They are also inserting a Picc line to get him some nutrition while everything is resting.

I told Paul I think this is his body preparing for the bigger surgery to come later down the line.  It's giving him all the trouble now so the doctors can get to know him and then be fully aware of how his body will react.  The doctors will then be able to anticipate and be ready for any complications.  Got to think positive thoughts and look for a good outcome.   Paul continues to keep his sense of dry humor and is fighting very hard not to become discouraged.

My son-in-law, Kevin drove me home last night to get the mail, bills and a few other things that had to be taken care of.  He then drove me back the same night so that I could continue to be at Paul's side.  Thank you Kevin from the bottom of our hearts.  And thank you Lisa for gathering all our mail and the papers I requested, you are awesome!

We'd like to send a great big "Thank You" for the cards, comments on this blog and well wishes received. To thank each of you  individually would take me a few hours so this will have to do.  .  

Hugs and love,

Jo and Paul

 "Good thoughts bear good fruit, bad thoughts bear bad fruits -and man is his own gardener."

James Allen

Enough

This morning we had a good start.  Paul had a BM at 4:30 am.  What a great present for me.  We were joking that this will be a birthday to remember !  Who else could be so happy at receiving a sh*t for their birthday?

Our celebration was short lived. When the  incision from the J tube surgery started to ooze while he was sitting and getting geared up for our morning walk.  I cleaned it, and let the nurse know.  It seemed fine.   Paul wanted to get some walking in after the achevement this morning.  The oozing filled four 4 by 4 pads within a few minutes.  Doctor came and put on some butterfly stitches .  He said should be fine just some small oozing.  Cleaned up , covered with gauze and towel in hand we were ready to attempt the walk again.  Made it a bit further, now the oozing was running down his belly.  Doc came back, squeezed it and said the insicion may need to be opened up so it can drain.  For now it will be a wait and see.  it is not infected, just a small part of the insicion opened.  Surgeon said to wait...walk later today and see what happens.  As long as there is no infection, the surgeon dose not want to reopen the insicion or put in a drainage tube.

When is this going to end?  Enough already!  How much more is it giving to take before Paul's positive outlook goes down the drain?  

Paul's feelings... It's one thing after another.

For those who know me all I can say is... It's Jo Lord, not Job!

Love and hugs to all
Jo and Paul 

Tomorrow, tomorrow, there's always tomorrow......

Another day and something new.

Paul had the NG tube inserted this morning.  Hopefully this will help with the build up in the abdomen and get him the much needed relief.  Blood pressure went down this afternoon, but seems to be on the raise again this evening.  Paul is very uncomfortable with this new tube, but if it works it will be worth it!  His abdomen is still quite large and he continues to battle nausea.  No sign of the bladder and bowels improving yet, but it's still early and we haven 't done our nighttime walking.

 It has been an emotional evening as we found out a very beautiful lady, who took us under her wing when we moved to Caliente Springs died on Sunday.  Dorothy was an inspiration of living life and taking joy in the journey.  Her journey is now over and we feel truly blessed to have walked a very small piece of the journey's path with her.

Peace, love and hugs to all our friends and family.
Once again, thank you for all the get well wishes and prayers.  I share the comments and encouragement s with Paul daily.

Jo and Paul

Turkish Proverb
Man is harder than iron, stronger than stone and more fragile than a rose.

Baby steps

Today's  update....

We had a good visit with daughter Elizabeth and grandson Gage yesterday afternoon.  Paul was walking the halls when they got off the elevator so Gage being a rambunctious two year old, decided to play "hide and seek", with Paul being the seeker.  Paul with the I.V. Pole in tow played along making a big deal out of finding Gage around corners.  Paul's walks have increased from five - ten minutes to ten -fifteen minutes.  He was worn out and took a nap when we got back to the room.

Later in the evening he attempted to get in another walk.  It didn't happen.  He sat on the bed nauseated and shaking.  Once again he started vomiting the brownish stomach bile.  It was a rough night with the bladder and the bowels not working.  His blood pressure has been going up and down like it has never done before.  He was sick to his stomach most of the night, even the meds didn't seem to help much, besides knocking him out.  Last night he had a ultrasound on the bladder.  They have been keeping a watch on it to make sure it is not so filled that it would cause more problems with the intestines and bowels not working.

This morning the doctor ordered an X-ray to check for blockage, thank goodness none is present.  It did show a lot of air and of course the feeding tube food.  Doctor said if the bowels do not empty themselves by tomorrow afternoon he will insert a N.G. Tube through the nose to remove the air and help the abdomen to decrease in size.    Paul did get some movement from the bowels but it also included a lot of vomiting this morning.   He is complaining that his esophagus feels like it is burning.  This is caused by the gastric acid coming up from the stomach.  Paul is still not eating or drinking.  It has been nine days since Paul has been able to swallow food.  Liquids are only very tiny sips, less the a teaspoon and extremely sparingly so he does not vomit it up.

On a good note, I was able to administer Paul his meds last night and once today to get used to working with the J tube.  I also have been cleaning it daily.  Nothing like learning something new!

We are hanging in there.....
There is Japanese proverb that continues to pop into my mind...." Fall seven times, stand up eight"
We plan to keep standing up no matter how many times this disease makes us fall down,

Thanks for the encouraging comments,
Jo and Paul

Sometimes it feel like one step forward....

and two steps back!

Very early morning as Paul sat vomiting, all I could do was breath deeply and pray.

He is trying so hard to do what needs to be done...breathing exercises, walking, thinking positive thoughts.

Today he farted,  you would think we had hit the lottery with the amount of joy we both felt.  A little step, but one that means the bowels are returning back to normal. It make take a day or two...but they will be forgiving.

As I read the emails received this morning of prayers being offered for us, I sobbed. It has been a long time since I broke down...well, not really, it just felt that way!  I think it was seeing the tear roll down Paul's cheek when he said "I'm trying m'lady...I'm really trying"

We are both trying.  I gave him a soft back massage as he stood looking out the window, it was so good to hear him sigh with relief, he let out  a moan ...I asked "does it hurt?"  "No,feels good".   To be able to comfort  him, give him strength, made me feel better.

My daughter Elizabeth and grandson Gage have been been here which has been a god send.  She has done "store runs"  provided meals and a shoulder to lean on.  Gage has provided Paul and I with smiles and the much needed distraction to all this.  Gage has really been a trooper to being in the hospital, being in strang place for the night and having to be in the carseat so much.

We are looking forward to this hospital stay ending and going home.

God bless,
Jo and Paul

March 10th update on Paul

We have had a few rough days.  Paul's recovery from surgery has not been speedy.  He continues to have problems with vomiting, bladder and bowel functions.  His body seems to be in turmoil over the two surgeries that he had and is struggling to get itself back to normal.

Paul's quote of the day " this is getting old"

We'd like to thank all those sending their "Get Well Wishes"

Jo and Paul

One more step.....

Paul had an appointment for an Endoscopy and Bronchoscope with the Thoracic Surgeon on Tuesday.  We arrived early so the staff was ready to take him back and get him prepped.  The Doctorow said it would be about a thirty to forty five minute procedure.  I went to get some coffee and camelback within fifteen minutes.  No sooner had I sat down, I was called back to the room.  The  nurse told me that they were not able to preform the test as the tumor had completely blocked the esophagus and that Paul would have to be admitted to the hospital to have a feeding tube inserted into his intestines.  I let the doctor know that we had an appointment for a surgeon back home for Paul to have a port put in for chemotherapy.  The doctor said they could do both at the same time.

Paul had surgery on Wednesday.  All went well, surgery is done, port in place and so is the feeding tube.  He is in pain mostly because they had to cut his abdomen open to move things around a bit to get the correct positioning for the "J tube"(feeding tube).  Doctor said we will be here for a few days.

Will keep everyone posted on the journey.

Jo

Progress. It's slow but ... progress

Sunday was a rough day.  Paul had a protein shake in the morning and tried to eat lunch.  It got stuck in the middle, so after several tries he gave up.  He couldn't even get a sip of milk down.  It was blocked.  The blockage causes him to vomit up whatever is in the esophagus at the time.  He wouldn't even hear of the suggestion to call the doctor or go to urgent care, so he went back to work.  I called him often just to check on him.  He came home, wanted dinner, took a small nibble and that wouldn't go down either.  Took him 3 hours to get down a protein shake.  I mentioned this episode to the Oncologist this afternoon (Monday).  The doctor immediately took him to the back room and had a nurse put in a IV then proceeded to get some fluids into him. It's not the blockage that is the immediate concern, because that'll get checked out on Tuesday when we revisit the Thoracic Surgeon for his third endoscopy, but the fact that he's getting dehydrated.

Oncologist wants us to see a general surgeon, here in the valley where we live, to have a port put into Paul's chest for the chemotherapy, and he would like to start chemotherapy on March 18th.  There was also the mention of a feeding tube.  I will talk with the Thoracic Surgeon tomorrow when we are at USC about all this too.

Looks like we are going to have a couple of busy weeks ahead.

Let me call you "Sweat Heart"

Next week is going to be a busy week for us with doctors.
Monday we will see the Oncologist for a follow-up for blood work he did on the last visit and to discuss the radiation and chemotherapy.
Tuesday we will be going back to USC for Paul to have an Ultrasound Endoscopy and Bronchoscopy with the thoracic surgeon.
Thursday a new doctor, the Radiologist.
Friday back to our Primary Care Doctor to get a referral to a Cardiologist to make the arrangements for Paul to have the Echocardiogram for pre-op.

Yep, a busy week ahead.

The support of friends, family and co-workers has been amazing.

Thank you,

From the bottom of our hearts.

This picture was taken after washing windows for a friend of ours on a very hot summer day.  

I teased Paul that I was his "sweat-heart"