Update June 26 2013

Today is Wednesday....

Yesterday the surgeon did the Bronchoscope.  I asked if I could stay in the room.  He said " You aren't going to faint are you?"  Silly doctor!  Not being a physician, from my viewpoint it looked good.  I could see where the repair was made on the trachea, including the stitches that were holding the muscle in place of the repair.  The surgeon said everything looked good.

Paul is doing better on many levels... his breathing is better, still a small struggle to maintain good oxygen levels when he moves a lot.  The staph infection seems to have cleared according to the last blood cultures takes.  The CT scan showed a small bit of air in the chest cavity but not enough to concern the doctors.  he was put back on the heart medicines and a beta blocker to help get the heart rhythms under control.  Last night Paul was given a try of food, a clear liquid diet.  Food will not have any nutritional value, it is simply for the satisfaction of tasting something.  He had a small taste of jello, tea, chicken broth and tea.  The feast was set before him and he relished each taste with great enthusiasm.   The Echocardiogram done the other day was to check for blood clots.  None were found so it was just one more reason for celebration in our ICU room.

Last night was rough as he could not sleep due to the rapid heart rate making him short of breath.  He is continuing to receive respiratory treatments every four hours.  That along with blood work and finger sticks to check his blood sugar was enough to keep him awake most of the night.

Today his heart rate finally went back to a normal sinus rhythm.  They have tried a different beta blocker and I climbed into bed with him and took a 30 minute nap holding my hand over his chest, talking to his heart and telling it how important it was to slow down so the body can rest.   The doctor on the ICU staff said she believes it was the cuddle that did it not the medicine.  I'll take the improvement no matter what or who is responsible.  The doctors also removed one more chest tube.  A whole bunch down and 3 tubes to go!  We are looking forward to getting him up and walking, being mobile will help him gain strength and improve on the outlook of recovery.

In all reality he will probably be in ICU for a couple of more days.  His condition is stable as long as the heart rate is within normal sinus rhythm.  Everything else is great!

Hoping today will be a bit more quite so he can get some much needed sleep.  I have threatened the nurses that I will stand guard at the door and not let anyone in if he is sleeping.  I know that can not happen, but it's a nice thought.

Thank you all for the warm loving comments, emails, cards received, well wishes, positive energy and prayers.  We are still climbing the mountain and can't wait to see the view from the top!

Hugs from us both,

Jo and Paul

Tuesday

Yesterday we met with the surgeon who is our current primary doctor in all of this and got some answers to our full page of questions.  Even though I wrote down the answers I think as time goes on we may need more clarification.  When stressed the brain can only absorb so much information before it becomes overloaded.

Paul will get a Bronchoscope today and if it looks good he will be allowed a clear liquid diet.  Yippee!!    We know that everything that goes in the mouth will come directly out the hole in his neck but after sneaking him a very small piece of flavored ice yesterday, it will be okay.  He took that small piece of ice, closed his eyes and a look of total joy washed over his face.  Which makes me wonder.......    Do we eat because we are hungry or for oral satisfaction?  I know it's both, but to what degree?  Over the course of his treatments he had lost the appetite for food and did not get hungry.  Even the flavor of food was not satisfying.  I know that could have been the result of the chemo drugs.   Now he wants to experience flavor, so even though he will not gain any nutrition from eating, the satisfaction of flavor will be there.  So back to my thoughts and question.... If we eat because we are hungry, then as soon as our stomachs are full we would stop and the would be no need for diets, right?   On the other hand, if we eat for oral satisfaction, that would explain the problem we have with weight control.  I know for myself I can eat a whole bowl of popcorn and continue eating long after I'm full because I enjoy the flavor and texture of it.  It doesn't help that I eat popcorn while watching T.V. So it's actually a mindless act of eating.  *smile

Paul oxygen levels are very good.  His blood sugar continues to fluctuate and he is being given insulin  as needed.   His heart rate continues to be too fast and irregular.  One doctor came in yesterday while his heart rate was in the 140's and asked "are you feeling palpitations?  Do you feel like your heart is racing?"  Paul said no to both, said he felt fine.   The surgeon firmly believes that the arrhythmia's of the heart are caused by the surgery and not an underlying heart problem. The surgeon said they had to move and handle the heart in both surgeries so it is aggravated and needs time to calm down.    Paul is still on antibiotics and one of the doctors believes that the staph infection he had could have also aggravated his heart.  This morning the blood cultures came back clean.  I remind that doctors "Practice" medicine and there is still so much that is not know about the human body.  His body has been under so much stress that I would like a couple of days of no poking, no medication changes and no more testing just to give him and his body time to heal on it's own.  But being in a hospital, I know that will not happen.

We still have a long road to recovery,  in my heart I know he is pushing himself to breath deep, wiggle his toes, cough and stay positive.

All roads do lead somewhere and soon this road will lead us back home.

Hugs,
Jo

Monday, Monday....

My intention was to do an update last night, but trying to clear my mind and get a bit of sleep took over.   How can someone feel so tired all the time?  And if I feel this tired I can't help but wonder how tired Paul must be feeling.

Yesterday turned out to be a busy day.  They got Paul out of bed early and he had his breathing treatment.  Actually breathing treatments are every four hours.   They are still trying to break up all the yucky stuff in his lungs so that his breaths will not be so labored.  After the morning treatment he was informed that Physical Therapy would be coming.  So he had P.T come and do an assessment on what he needs.  After that Occupational Therapy came in to do an assessment of what he will be needed.  Paul continues to have his blood sugars check every hour.    It was a very busy day and he was exhausted.  In the late afternoon we both needed a nap so the nurse was kind enough to pull the curtains and not let anyone bother us for an hour.  The nurse even offered me a hospital bed to lay in, I told her I really appreciated that but I am highly allergic to hospital beds and they give me a rash.

Last night as Paul dozed off, his heart rate once again went up.  He continues to struggle with his heart rate maintaining a normal sinus rhythm.  This morning I was told that he went into AFIB again, it was brief, but all the same it was there.  They will be doing an Echocardiogram sometime today.  This brought up a lot of questions from Paul.  One was..... What's next?  How much more do we put his body through?  At what point is his quality of life compromised to where the quantity is not important?  I've asked for a Social Worker to come talk to us both as I think we a starting to feel the effect of him being in ICU for so long and the exhaustion for us both is taking a toll.

We never even discussed the possibility of this outcome.  Him ending up without an esophagus was never one of listed complications.   We are struggling with questions and need answers.  I have a list of questions and will be asking the doctor to set aside some time to talk with us both.

That is the update for this morning.

Hugs to all our dear families and friends.

Jo

This is Sunday, June 23, 2013

Paul asked me what day it was this morning when I walked into his ICU room.  I hate to admit it, but I didn't know.  I had to check the calendar that is hanging above the board in his room.  We are both losing the concept of days as they blend together.

Yesterday,Saturday, was another roller coaster day.  When I arrived the doctors had mentioned the possibility of Paul going back on the ventilator.  My heart sank.  When I asked him how he was feeling, he gasped and said "I feel like I'm dying". Needless to say I felt helpless and saddened.  We have come so far and for him to feel so bad hurt my heart.  I sat on the bed and told him he needed to take deep breaths and that I loved him too much to let go. I told him we will get through this.  His exhaustion from the labored breathing was making him feel extremely tired.  As we sat calmly talking his oxygen level improved and his heart rate slowed.  The doctor said that he was going to go check all the numbers from the night before and then make a decision regarding putting him back on the ventilator.  When the doctor came back, he saw the improvement and said they would hold off for a while.  I sat with Paul and we concentrated on slow deep breathes.  We focused on the love of our family and friends.  We talked about being bathed in the warmth of healing energy and light.  We gave thanks for all the prayers being offered up for healing and peace.  We felt immersed in peace and love. I told him we were in a bubble of absolute, unconditional love and nothing negative or harmful could reach us.  I told him that our love was stronger than anything in this world.  His numbers starting improving dramatically and the ventilator was not needed.

Over yesterday and this morning, Paul is trying to remember and comprehend everything that has happened over the last two weeks.  He was in a fog about the second surgery.  He did not know that he was paralyzed or that he was on a ventilator. He talked of some really off the wall things and we owed about it.   The drugs they gave him will take a couple of days to get completely out of his system.  He could not stand on his own yesterday and i was told that is a side effect of the paralysis and he will need some physical therapy to help with the muscles getting stronger.  The swelling in his hands and arms has gone down to where his fingers look normal again.  We have gone over everything several times with him asking questions.  I am focusing only on the positive.  He now knows it was very serious, he knows he was in  critical condition for a few days and he knows the esophagectomy surgery failed.  He also knows that we, him and I, will get through this.  It is just another  small detour on our journey together.

This morning he is actually looking at emails on the laptop, concerned that he needs to take care of some minor work things and smiled at me with eyes that made all the worries briefly go away.  He is healing.  Out of the eighteen I.V.'s he had only four are left.  He is receiving food once again via the J Tube.  My main concern is his heart as they have not been able to get him off the medicine that is keeping him out of  AFIB.  He continues to receive insulin, but for some reason, that does not worry me in the least.

My emotions are being shelved and put on hold so that I can remain strong for him.  I told him when we get home we are hanging the "do not disturb" sign, turning off the phones and spending a couple of days resting and cuddling.

My hope today is for Paul to become strong enough to leave ICU so we can look toward the idea of going home.

I will try to do an update tonight.

Hugs to all,
Jo

Update on Paul

I wish I could individually thank every single person who has sent well wishes, asked for updates, said a prayer, email a question or asked for an update, but then... That would take months!

Paul is doing well. They have removed him for the ventilator.  He is somewhat awake and talking.  The doctors want him to rest tonight as now the healing needs to began all over again.  Paul actually said "Caddie Shack", What he meant was "Groundhog Day" Because afterwords he said "Deja vu"

We are not completely out of the woods. The good news is they have moved almost half of the I.V. Medications, his heart is a steady rhythm with very few PVC or missed beats, but he is still on the heart regulating medications.

Tonight he needs to rest and breath deeply so as not to get pneumonia.  He will be getting
respiratory treatments every four hours.  If he becomes to tired from breathing or the breathing becomes labored they will put him back on the ventilator.  They are checking his blood surgery every couple of hours and giving insulin as needed.  His temperature has been within normal limits throughout the day.

I will be going to sleep in a bed tonight.  Elizabeth has rented a place for the month so that I have a place to get away from the hospital to get some I disturbed rest and a hot shower.  Tonight I really need both.  I will try to get back before the 6:30 am Resident Rounds and the nurses shift change.

To all our friends and families, yes we have many families..... Thank you

Jo and Paul

Thursday Night

After a very emotional and unknowing day Paul is improving.  Heart rate is in normal sinus rhythm and they have weaned him off the medication that kept him paralyzed.  He shows signs of understanding and small movement.  he squeezed my hand!  He continues to be sedated and is on the ventilator.  Removing him from the ventilator is going to be a slow process as they have to make sure his oxygen level is good and he does not cough.

It was a very hard day of up and downs.  His heart rhythms, blood pressure and temperature were all of the range of highs and lows.  But he is currently stable and resting.  Tomorrow they will try to get him off some of the many drugs that are assisting his stability.

As the doctor said  "we are not out of the woods yet, but we a on the right road"

Thank you all for your prayers.  Now I will get some much needed sleep.  Hope my mind shuts off and allow me to sleep.

Hugs,
Jo and Paul too.....

Paul

Paul is still In critical condition.  He is medically paralyzed and heavily sedated.  The ventilator continues to do his breathing.

His heart rate has been in ventricular tachacardia all day. He had a temperature of 103 or higher most of Wednesday.   The temperature came down with the help of a cooling mattress Wednesday night but his heart continues to race.

 It is a struggle to get the organs to work together. When they slow down the heart rate,the blood pressure drops.  When they add fluids  to get the kidneys flushed, the lungs become saturated.

The doctor has said as long as all the vital organs are working,we are okay.
So for now, we are okay.

Jo

Morning update

Paul's night was fair.
This morning they did a brochoscope to check on the newly created "flap" it is doing okay.
His temperature is currently 102 degrees and blood pressure is down but his heart rate remains high.

Paul heavily sedated and is medically paralyzed to prevent him  from trying to breath on his own.  They want the ventilator to the work for him.  They said they will probably try to remove him from the ventilator later today, they do not want to damage the new flap.

I continue to remind myself that the doctor said the next 48hours are critical and not worry.  48 hours....   2880 minutes........  We will get through this even if it means taking one minute at a time.

I hold his hand and tell him he is doing well.  I let him know that all of you are praying for him.  I tell him he is surrounded by a beautiful and peace filled energy that is being sent by all our friends and families.

I want to crawl in to that bed with him and hold him so close to me, but I can't so holding his hand will has to be sufficient for now.

I will post an update later this evening.

Hugs and love,
Jo and Paul too

Stubborn Bastard

Before going into surgery, Paul put his hand on my cheek and said " Don't worry, I'm a stubborn bastard " and  "I want that to be the name of the next blog"

So here it is.... The next blog.

Paul is out of surgery.  The deteriorated newly built esophagus was removed, what could be salvaged was replaced back into the abdomen.  The deterioration actually ate through to his Larynx, but there was not any long term damage.  Thank goodness they did surgery today, if they had waited the stomach acid would have eaten it's way through to the windpipe.

Paul will be kept paralyzed and sedated for the next twenty four hours.  He will be on a venterlator to assess his breathing.   The surgeon said the next forty-eight hours are critical.  Once again we wait and let go of things we do not and can not control.

I hesitate to post anything else because I prefer to give Paul time to get through this period and post later.

I want to thank everyone for all the wonderful support and good wishes, reading them has given me strength to endure the emotional roller coaster of this small detour on our journey in life.

Thank you all for being part of our journey, you all make our lives enriched and blessed.

Hugs,
Jo and one Stubborn Bastard

Emergency Surgery this afternoon

The surgeon came in this morning to do an endoscopy to check on the attachment of the stomach creating the new esophagus.  The news is not good...
Paul has a collapsed lung and  9centimeters of the new esophagus has deteriorated and will have to be removed before it can become infected.  Paul will be going back into surgery this afternoon after 3:00 pm.  They will put what is left of the healthy (new esophagus) stomach back into the abdomen.  A repeat surgery to rebuild a new esophagus will take place after everything is healed.

I will update later..
Jo