Home, now onto healing

We are home.  Now the healing begins, and the chaos of scheduling medical appointments, nursing visits, and supplies being delivered or not!

Paul's strength and stamina is very low.  He barely made it up the stairs last night, saying "I can't do this!"  I continued to encourage him with "Yes, you can, you are stronger than you think!" "Besides, I'm right here behind you if you think you are going to fall!"  I didn't stop to think who would be behind me if he fell backwards, but then again, I think my Guardian Angel got it covered!   He he did it! I think I should have had a ramp installed or asked if anyone had a ramp that was not in use.  I know how hard this is for him, the everyday struggle.  To walk up the 2 steps to the bedroom leaves him gasping for breath.  It will take time and a lot of effort.  I am encouraging him to do a little more each day as I feel it is the only way he will regain the muscle in his legs.   And he has to gain back that muscle because he is a little bit too big for me to carry!  *grin   Paul lost 30 pounds again, but in losing the weight, he also lost muscle and fat. Anyone who knows Paul, knows he didn't have any fat to lose.

On another good note, as soon as Paul is strong enough to make it down the stairs, then he can get in the pool for some water exercise.  I told the doctors about the wonderful Underground  Hot Spring Mineral pools and Spas at Caliente Springs, and they all think it is a fabulous idea for Paul to get in and take in some of the healing energy that it would provide.

Below is a a flow-sheet I created to stay on top on everything Paul needs during the course of the day. I'm sure there is going to be more then what is reflected on the flow-sheet, but this at least will help me stay on track with what he needs from 6 am to bedtime.   Somehow we will fit in our weekly visits back to L.A., time for the oncologist to do a follow-up visit and me to get my medical appointments.  I'm not worried, I know it will all fall into place and be exactly as it should be.

Thank you to all who continue to share in our journey.

Hugs,
Jo
   
P.S. Thanks for Chicken Soup, it was delicious!

On our way......

Wheelchair - Check
Walker - Check
Medications - Check
Pillow to hold to stomach - Check
Sleeping Wedges - Check
Portable Suction Machine - Check
Prescriptions filled - Check
Discharge Instructions - Check
Medical supplies to get through the next 24 hours - Check
Last dose do Pain medication - Check
Paul - Check

And we're on our way..... Homeward bound.

July 29, 2013, Homeward Bound

After 49 days in the hospital for what was suppose to be a 14 days stay, we are going home!
Even if Paul is not able to "Jump for Joy!" we are elated at the thought of being home.

Not sure what time the discharge will happen, but it will be today.

The Discharge Case manager is in the process of gathering the things we will need: Wheelchair, Walker, Suction supplies for the tracheotomy and esophageal fistula and whatever else we may need.

Homeward bound.

Hugs to all who follow our blog and give so freely their strength, love, prayers, hope, well wishes, positive energy, good thoughts and smiles and hugs across the miles.

Jo and Paul

Sunday July 28, 2013. Hospital Day 48

Paul had a rough night last night and is feeling very tired today.
12:30 AM Coughing, choking....  I suctioned the tracheotomy
1:30 AM Heavy coughing, choking....  I suctioned the tracheotomy with a small amount of sterile saline.
3:10 AM Coughing ...... I suctioned tracheotomy
5:10 AM Paul requested something for pain as his stomach muscles and right back/shoulder are sore from all the coughing.
6:00 AM. Blood draw...... The start of our morning routine...Chest X-ray to follow then morning medications.

Sometime today I will get Paul up to take a shower.  I know it will tire him out and zap any energy he has, but I also feel it will be good for him to have the water run over his body and rehydrate his very dry skin.  I teased him this morning and told him he looks like a snake with all the skin he is shedding.  I will warm some lotion and try that too!

I'm hoping that later today he will have the energy to do his daily walking (Physical Therapy) and his arm exercises ( Occupational Therapy).  I don't want to push him too hard, but I don't want any set backs either. He has worked too hard and come too far to let a bad day send him backwards.   We know this will be a long recovery.  Paul weight loss alone is going to take time, probably months to recoup some of the fat and muscle back to his body.   I wish there was a way to "suck out" the fat from my body and give it to him.  Lord knows I have enough to spare, especially after this hospital stay.   I tend to stress eat all the wrong foods.  *smile

It is fairly early and I am hoping as the day progresses so will his energy and strength.

Thank you all for you constant encouragement, well wishes and shared energy.

Jo

Friday - July 26, 2013 -Day 46

When I look over everything that Paul has endured over the last 46 days, I can understand why Chris, the Case Management R.N. was so surprised when she walked onto the room and saw Paul sitting up watching T.V.   Chris said "I expected to find a man curled up in a fetal position unable to respond"

Paul has come a long way and we know there is still a long way to travel before things can have any resemblance to normal.  But, he is one "Stubborn Bastard" and we will continue the journey together, hand in hand, side by side!



Paul is struggling to gain back strength.  He continues to walk as much as he can but after 50 feet tends to run out of energy and breath.  But each day brings a step or two more.  He may not be ready to run a marathon anytime soon, but it's okay, we can walk slowly and stop to smell the flowers, examine a piece of grass or pause and enjoy the breeze as it flows through our hair.

You want me to walk how far?

Our biggest battle at the moment is finding a way to place his ostomy bag on his neck without it interfering with the tracheotomy.  The problem is there is less then a half inch space to work with.  This is not your everyday problem as even the Ostomy R.N. doesn't have an answer. The saliva eats through the adhesive ring and there is the danger of it infiltrating the trachea site thus infecting the bronchial  and lungs.  I continue to cut and date each new trial ostomy bag hoping for one of them to be the answer!   I'm going to write to the companies that I have found on line, send them a picture and ask for help.  I know Paul is not the first person to have to deal with this and someone out there has to have figured out a way for it to work.  I am almost at wits ends as Paul skin is becoming very red and irritated from having the bag put on and taken off because of it leaking several times a day.  It would be fine if he didn't want to drink something to soothe his mouth and feel the coolness in the back of his throat.  Even the doctor has said this is a very unique situation.

Yes, I love that man of mine!

Since Paul can not get any nourishment or hydration via his mouth, I am adding water every two hours via his Jejunostomy tube.  This is going to be especially important when we go home as the danger of him dehydrating will increase.  One of the nurses suggested that I get a small humidifier to keep near Paul so that his throat and nasal passages don't become dried out.  This is something I didn't even think about in all the planning to go home.  Today the doctor removed the last chest tube.  Paul is now tube free, with the exception of his feeding tube, which he will probably keep for a few months even after the future reconstructive surgery.  If all goes well this weekend and Paul can get out of bed on his own, climb a few steps and stand without assistance, then come Monday we can go home.  It would be so good to sleep in our own bed and relax in our own home.

My daughter  gave me a small gift.  She said I was Wonder Woman. I've never thought of myself as anyone other than just Jo.


Not Wonder Woman...Just Jo!

Things I have learned with this hospital stay:

• the difference between a stome and a fistula
• How to put on an Ostomy bag.
• Cleaning a tracheotomy twice a day, which includes taking it out, scrubbing it and putting it back in.
• Suctioning down inside the tracheotomy to prevent choking.
• Keep a chair handy on walks.
• Trust your instincts.
• Never ever, ever, ever, give up hope.
• You never know how strong you are until you have to be strong.
• Taking care of someone you love, makes you love them more.
• Almost losing the one you love makes you realize how much you love them.
• Never take an "I love you" for granted.  You never know if it's the last time you will hear it!

On a side note.  I'd like to send out a big "THANK YOU" to all those who have contributed to our Funding Site, http://www.gofundme.com/35f77o  I can not believe the response we have received.  I am overwhelmed by the generosity of our families and friends.  Paul and I thank you from the bottom of our hearts. 

Hugs,
Jo and Paul

“Why did you do all this for me?' he asked. 'I don't deserve it. I've never done anything for you.' 'You have been my friend,' replied Charlotte. 'That in itself is a tremendous thing.”
― E.B. White, Charlotte's Web

Paul walked from his room in ICU to the doors of the unit and back.  It was an amazing feat.  He did struggle and had to stop frequently, but he made it. 

Paul walked all the way to the double doors and back!

It seems as if the reward for his labor was getting one of the two remaining chest tubes removed.  Now mind you, the chest tube goes into his side and is the diameter of my thumb, so this is not as innocent as removing an I.V.   Dr. Tatum was great, he told Paul, "I'm going to count to three, you need to hold your breath so you don't take any air into the chest cavity"  "I will pull the tube out and then pull the stitching to close the hole"   "It should take about 2 seconds"  Paul said "Okay, I'm ready"  Well.... 1, 2, 3, tube out, some very loud moaning, stitches pull to close the wound, some more moaning and DONE!  Paul looked at Dr. Tatum and said "That was more than 2 seconds!"  Got to love my husband.....*smile

Leaving ICU.

We are out of ICU.  Paul stayed off oxygen all morning and into the afternoon, his vitals all are holding steady, he is coughing better so out to a regular room...Finally!!!  The nurses sang him a "Graduation" song.  It was bittersweet to leave ICU.  So sweet that Paul has mended enough to go into a regular room but so sad to leave the nurses and ICU doctors that had given awesome care and encouragement.  The staff on 7 West ICU are to be commended for their dedication and hard work.

I have learned how to put on an ostomy bag to the stoma on the side of his neck, which is currently where his esophagus ends.  And I am getting better and better at it every time.  I have also learned how to suction his tracheotomy when he can not cough up what needs to come up and also how it will have to be cleaned on a daily basis.  The nurses in ICU have been kidding with me that I should get CNA certification and come work here.   I've graciously declined and told them that taking care of Paul is enough for me.

We are on a roll and making progress to going home.   I know it will be a lot of intense work to get him strong enough for the next surgery, but I am confident that being home and surrounded by the love of family and friends will do more good then all the medicine in the world.

We continue to have Hope and Strength....
Hope that things will improve every day and Strength to hold on until it does.

Love and hugs to all our friends, families and loved ones.  
Jo and Paul

Monday July 22, 2013 - Day 42 in ICU

We made it through the weekend and had progress too!  He is looking better everyday and slowly gaining strength and mobility.

A look of amazement as cheers greet him as he walks from his room.

On Saturday, Paul got out of bed and walked from one side of the room to the other where a chair was waiting for him to take a seat.  He is weak, but is giving every effort to regaining his muscle strength in his legs.  While sitting, Paul will do 'heel raises and toe pointing"  both of these exercises are to help strengthen his ankles and help his calf muscles stretch.  He had a lot of coughing, this is really a good thing as it brings up the phlegm that continues to form as the bronchial and trachea make progress on healing.   Sometimes his coughing is hard to watch as it seems he is choking, but I am getting better at not panicking. 

Sunday started with Paul having his bronchoscope.  Things look better inside too! I have developed enough of a rapport with the doctors and nurses that I am able to stay in the room while most of the tests are preformed.  It has been very good for me as it helps me understand what he is going through and also I have a little bit of knowledge to answer his questions or at least I am learning who to direct the questions to when they arise.  The afternoon was quiet as Paul slept off the drugs that help him relax during the bronchscope. 

Struggling with the last few steps to reach the green tile on the floor.

On Sunday late afternoon they put Paul under "Contact Quarantine" as a precaution because he was having some bowel problems.  They had him tested for Clostridium Difficile.  This is a serious intestinal infection due to prolonged use of antibiotic.  I didn't think anything was wrong as he has not had a fever, abdominal cramping or any noxious odors.  But I followed the rules and put on the gown and gloves before entering his room.  All we  had to do was be patience and wait for the cultures to come back negative, which they did.  I figured with all the antibiotics that he was on, another infection would have to be pretty strong to survive in his system, especially because the antibiotics used to treat the infection were the same antibiotics he had been on for the last couple of weeks.  Even his attending nurse was doubtful, but protocol is protocol.  Later, Sunday night Paul got ice chips and a small bit of cranberry juice to add some flavor to those ice chips. It is always a delight to see him enjoy the small milestones he has achieved.

Delighted in the tasting of food

Monday morning brought Paul walking and talking.   He actually walked out of his ICU room to the nurses cheering him on.   Dr. DeMeester came in and was amazed at how much Paul had progressed in the last week.  The prognosis for the coming week:  Remove the staples from the incision on his back, replace the tracheotomy tube with one for talking, totally off any assisted breathing including added oxygen, if the night goes well, take out the remaining chest tubes tomorrow and get him out of ICU.  Spend the rest of the week in a regular room then possibly be released to go home within the week.   I would love to go home.  Sleep in our bed, visit with friends and just be able to be home...in our sanctuary...our humble abode..... home... where you live, love and are able to be at peace.

Tonight we are praying once again for rest, peace and healing.  In my nightly prayers, I give prayers of thanksgiving to all of you who follow our blog, pray with us, send us well wishes, positive energy, healing light and most of all your love.

Paul and I feel so blessed because we are surrounded by the love of families and friends.

Love and Hugs to all,
Jo and Paul too!

Friday, July 19, 2013 Update on Paul

He can walk!  He can talk!   No, it's not Frankenstein, It's Paul M. Hine!!!!!

The Speech Therapist put in a different trachea cover and I heard Paul's voice for the first time in three weeks!  It was just above a whisper, but he talked!   I cried with joy at hearing him say "I love you more than you can ever know"    Tonight they had to switch him back to the regular trachea cover so he can cough up the yucky stuff, but it doesn't matter.... I got to hear his voice!

The little purple trachea plug that allows Paul to talk!

 

 The day continued to be an exciting and busy day.  Physical Therapy had Paul walk around the room, he was up in a chair three times and the wonderful Nurses and Respiratory Technician made sure that Paul got outside for his weekly fresh air and sunshine therapy!   Paul doesn't want to bother them with the chore of getting him outside, but they all assured him that they enjoy the break in their daily routine and the fresh air does them good too!

 

Leaving ICU and making an escape for the great outdoors.



 

We continue to give thanks for the nurses, therapist, patient technicians, doctors and so many others who contribute in the daily care that Paul requires.  They have all been amazing on so many different levels.  I don't think they will ever know how much we appreciate their hard work and dedication to their chosen field.

 

 

Enjoying a breath of fresh air with a couple of great nurses!

 

It has been a great day with so many more accomplishments then I could have imagined.  Today I had moments of "Happy tears"  His morning bronchoscope went well, his chest x-ray didn't get worse, his blood work continues to improve, they removed another antibiotic and his vital organs are functioning the way they are suppose to be functioning.  His heart continues to flip flop in crazy rhythm's, but that is treatable with medication and can still be a side effect of the trauma his body went through with having four surgeries in as many weeks. 

 

On Saturday, we reach Day 40 in ICU.  But you know what?  It doesn't matter.... I got to hear his voice.  All is okay in my world.  I got to hear him say "I love you" one more time.  Lesson learned.... never, ever, ever take it for granted when someone says "I love you"  You never know if it will be the last time you get to hear it!

 

To all our wonderful friends, family and loved ones, thank you for all the expressions of love and encouragements.

 

Jo

 

 

Life is only traveled once. 

Today's moment becomes tomorrow's memory. 

Enjoy every moment, good or bad, because the gift of life is LIFE itself!







Thursday night July 18,2013

We are thankful for all the love and well wishes that are shared in the comments on this blog.  Never in our wildest dreams did we ever think this would become our main avenue of communication for family, friends and loved ones during an experience such as Paul cancer and surgeries.

Paul has now been off the life support ventilator for over 24 hours.  We are rejoicing in the fact that even though he has a tracheotomy, he is breathing unassisted.  I hope that soon I will be able to hear Paul's voice again.  The doctors have talked about refitting the tracheotomy with a different fitting that would allow Paul to talk.  It has been 3 weeks since he was able to talk.  That's a long time for him to put up with me talking for the two of us!  But then again, I am not one who ever is at a lost for words.

The last few days have been good days.  Paul's blood work is showing improvement, the doctors have removed two of the six antibiotics, his blood sugar has remained steady for the last 24 hours and he even managed to take ten steps with the help of a walker this morning.   Paul sat in a chair this morning for 2 hours and again this afternoon for 1 1/2 hours.   All in all these may seem like small baby steps but for us they are monumental achievements!

We know there is still healing to take place as Paul has two small holes in the repair that was made to his trachea.  He still has the two drainage tubes in his chest and is looking forward to the day when they can be removed as they a cumbersome to say the least.  We are thankful for the progress he has made so far.

 Tonight will be Paul's second night off the  ventilator.  I am blessed that the doctors and nurses understand my need to stay with him and have made sleeping accommodations in his room for me.

Thank you again to all our family, friends and loved one for everything you have done in sharing this journey with us.  Your ll wishes, cards, prayers, positive envy and love has given us strength and encouragement.

Hugs,
Jo

Don't Faint ! It's Paul Again :)

Just another personal quickie for all my friends, loved ones and family.

Can't talk, can't eat, can't walk, can't drink, practically bedridden ... but things are, surprisingly, improving.

Paul

I love Jo and everything she does for me ... just want her to know that :)

Sunday. July 14,2013. Day 34 in ICU

Paul is doing much better.  Yesterday and today has brought us so much joy and happiness.  Paul has spent most of  today without assisted breathing from the ventilator.  He sat up in a chair for an hour and a half.  He even had another trip outside.

 

The bronchoscope this morning showed that one of the holes in the trachea is smaller and healing.  The hole that was bigger and required more repair looks okay too.  The chest X-ray this morning showed that the air in the chest cavity has reduced from the size of a 2 liter pop bottle to the size of a can of pop.  The intake and output volume of oxygen is relatively even which means there is less and less air escaping into his chest cavity and actually going in and out of the lungs.  As the doctor told me this morning, we are on the road to a very slow recovery, not out of the woods yet, but things are looking better then they have in the past few weeks.  I had the doctor draw on a picture of the trachea where the holes are located, it was interesting to learn that they actually removed a rib in one of his surgeries.  I remember the surgeon mentioning a rib, but it never registered in my brain that they removed the whole rib.  That certainly explains why he continues to have so much pain on his right side.

Paul has not had a fever for several days and his other vitals are getting better little by little....blood sugar, sodium levels and oxygen levels although not back to normal, they seem to be improving.

Thank you for all the cards, get well wishes, emails, prayers, positive energy and smiles across the miles.

I can not wait to start collecting all the hugs in person.  It has been a very long, tiring month.
Jo

Friday July 12,2013

Another good day with a lot to celebrate.
Paul had his morning bronchoscope to clear out any overnight secretions.  No fever.  A trip outside to enjoy the warm sunshine, fresh air and get a break from looking at the four walls of his room.  Paul had ten hours of unassisted breathing.  That in itself is enough reason for me to jump up and down with joy!

I will post some pictures tomorrow because tonight I am just too tired.

Thank you all for the continued prayers, love, well wishes and all the support.
Hugs,
Jo

July 11, 2013 - Thirty One Days in ICU

There is something to be said about being in the hospital for any length of time... you lose all perspective of time!  Today has been an emotional day for both Paul and I.  Neither of us slept well last night.  We both had a rough time with the life and death decision of having the tracheotomy and the fact that Paul had to continue life support on the ventilator.  You would think these are easy decisions to make, but actually they are not.  That all aside, Paul had a good day.  So good in fact that he posted on the blog and I didn't even know about it until this evening when my oldest sister told me about it via Instant Messaging.

Paul did have a bronchoscope this morning to clear his airways.  I hate that they have to do this as I know from what one of the resident doctors told me... each time they go in, there is a chance of damaging the airways and/or causing an infection.  But they did it, it seemed hurried to me, but his airways were cleaned and he did well with it all. Breathing treatments will continue round the clock, every four hours to help keep the airways clear and hopefully reduce the need for future bronchoscopes. 

Paul did well with his first weaning this afternoon.  He spent two hours off the ventilator before getting tired and needing to be put back on it.

An ultrasound was preformed on his arms and legs to check for the movement and new development of blood clots.  The previous blood clots that were found in his arms weeks ago are still there, they have grown smaller, but are still present in either arm.  And no new blood clots have been reported as I type this.  So that is good news for the day! 

Paul's blood sugar was also down this evening, and cause for another celebration since he did not need an insulin shot! 

A good day and we are praying tomorrow will continue to bring smiles, rest, breathing on his own, rest filled sleep and healing.

Good night and may you all be blessed.
Jo

wow a post from Paul

I'd like to thank everyone for love and care, especially my beautiful wife, Jo

Love to you all.

Paul

July 10, 2013

Today started out with hope and expectations. Paul was sure that today he would be able to get off the ventilator and breath on his own. He was hopeful that this would be the day to stop the daily bronchoscopes and was encouraged by the surgeon that he was well enough to get off the ventilator.

This morning the doctors did a bronchoscope to clean out any fluid build up from the previous night. There didn't seem to be much mucus which seemed to be a good sign. I know it was very hard for him as he was not sedated for this one as they wanted him to be alert and awake to try and get him off the ventilator.

At 9:00 AM they took him off the ventilator. The doctors felt that he would be fine instead of trying to wean him over a few more days. He did well with the coughing up phlegm and taking deep breaths all morning. He even was smiling and bright eyed as Elizabeth and Gage came to tell him Goodbye as they were heading back up North for a much needed trip back home.

The doctors came in and did their assessment and ordered his chest tubes off the bubblers.  I'm not sure what the bubblers do, but I think they help drain the fluid that builds up inside of Paul's chest from the previous surgeries as he's had them since the first surgery.  Not long after that Paul seemed to have trouble getting in enough air to cough. I let the nurse know that he was having trouble and she turned up the amount of oxygen going to his oxygen mask. This didn't seem to help, so the doctors were called. Paul had been adamant about not being put back on the ventilator but with the fear of drowning from the fluid in his lungs he agreed not only to going back on the ventilator but also into surgery for a fourth time. When the doctor ordered the ventilator back on, within minutes Paul's blood pressure, temperature and heart rate all increased so much that I feared he might not make it to the operating room. I'm beginning to believe that Paul's body is protesting all the tubes and needles. It seems that whenever they insert something new he has a reaction. Paul was taken into surgery to have a tracheotomy placed to support his breathing. He is once again resting and tomorrow will be a new day.

The tracheotomy is going to present a challenge as it sits right next to the hole that is in the neck from the failed esophagectomy surgery. The ostomy bag, which was put in place because Paul does not have an esophagus anymore, overlaps the tracheotomy tubing.  It seems we continue to come to more and more bridges to cross. As Paul said to the doctor before agreeing to yet another surgery, it is always "one more thing" . The doctor assured Paul and I that the tracheotomy will not interfere with the healing of the repair on the trachea.  All we can do is trust the doctors to know what is best for Paul.

Paul is sleeping and I pray that the rest will be peace filled and give him some healing.  I rest when I can and sleep whenever I feel tired, but the concerns of all this is becoming overwhelming.  I do owe one doctor an apology as I think I lost my cool with her after seeing him from this latest surgery.  It is so hard to watch the one you love go through so much.  Especially when you think the right decisions are already in place and they turn out to be questioned or the feeling of being over ruled. 

Paul continues to be concerned that the daily brochoscopes will cause damage and that the repair that was made in the third surgery is still not completely healed.  We both want Paul to get well enough to go home before we have to go through the now needed Reconstruction surgery in the future. 

I continue to remind myself... One baby step at a time.

Thank you for all the cards that give Paul encouragement.

Hugs to all our family and friends.
Jo

July 9 2013

Baby steps.
Paul has had a couple sessions of breathing on his own.  No problems.
There is still a hole his trachea, but the doctors feel that it will heal.

He is feeling stronger and more positive then ever.
We are looking forward to having conversations and kisses again!
I have decorated his room with cards, tissue flowers,  pictures and of course Charlie the bear.

Thank you all for the well wishes, prayers and positive energy.  We are surrounded by the love that is constantly enveloping us with hope.  We actually feel that we are in a bubble of divine love and light.  No worries can penetrate the positive energy aura that is all encompassing.

Jo

A little fresh air and love

Sunday Paul had a remarkable day and I have to share it as I am overjoyed with the progress. I requested that Paul be taken outside for some fresh air.  I knew it would not be an easy task as Paul is still on the ventilator and has not been out of bed for over a week.  The ICU doctor said it could be done and the surgeon agreed that even though it would require a bit of work it may be just what Paul needs.

A little fresh air..........

 

The blood cultures are negative to any infection in the blood.  More fantastic news…. Paul has gone more than 24 hours without a fever.  The changes in antibiotics are finally working.  

 

 This morning the doctors did a bronchoscope and cleared out the phlegm that builds up inside of him because he is unable to cough while being on the ventilator.  In clearing it out the decision was made that he should have one at night to help relieve the hard breathing while he sleeps thus making his sleep and rest better.   For now Paul will have a bronchoscope in the morning and at night.  We know there are risks involved with having this procedure done so often, but for now it is the only way to keep the lungs from getting a build up that can cause damage to the parts that need healing.

 The doctors are reluctant to take him off the ventilator and Paul agrees to take it very slow and try to do small slots of time of being unhooked to help get the lungs back into working mode.  This weaning may take some time and right now we do not want to rush anything.  Paul has traveled some very rough roads over the last few weeks and the journey on this road is still a long way from being over.  We will cross the bridges as we get to them. 

 

Right now, we are celebrating the baby step achievements.  If nothing else, we are learning to live in the moment and not have any expectation of tomorrow.

 

and Love!

 

 

Thank you for your prayers, comments and love.

Jo

 

Saturday July 6, 2013 Rest......

Bronchoscope done this morning. 

Paul is okay but not strong enough to be removed from the ventilator. 
We will let him rest today and tomorrow. 

Will remove the ventilator on Monday.

So now we rest and I will probably not update until Monday.

Friday July 5, 2013

Paul had a bronchoscope this morning.  Things are the same, they sucked a lot of phlegm from his lungs.  It took him  a lot longer to recoup from the sedation this time.  

They tried to wean him from the ventilator.  He did okay this morning and breathed on his own for almost an hour without becoming tired.  This afternoon was harder.  He had trouble breathing and his heart rate jumped up and his blood pressure dropped.  They gave him medicines to bring down the heart rate and more medicine to get his blood pressure up.  They also gave him three units of blood.  Paul has been on six different antibiotics for several days.  The doctors do not know why his fever jumps up to 103 with everything they are giving him.  

Tonight we are going to snuggle and rest before they take him off  the ventilator tomorrow as per the original plan set into place at the beginning of the week.

Hugs to all our families and friends
Jo

Thursday July 4, 2013

8:30  PM and this is my daily update. 
I feel like I should be saying something profound like the news casters do, not the everyday news casters, but the important ones: Andy Ronney, Walter Cronkite, Ted Koppel.  I'll have to think up a catching phrase...  or maybe someone can suggest something.

Anyway  here is the update on Paul.
Late last night we experience an episode.  For lack of what else to call it, I am calling it "an Episode"
I did manage to lay down with Paul for an hour.  He and I held hands.  Since he was still under the effects of the medicine  given to keep him relaxed and sedated during the bronchoscopy, there wasn't much communication.  I got up after an hour, went to get my night time drink before checking emails and trying to relax.  I tried getting Paul to acknowledge me several times, but thought to myself that he was extremely tired so i did not pursue getting him to respond.  At approximately midnight, while I sat reading I noticed that Paul was staring up at  the ceiling, I noticed this went one for about 15 minutes so I went over to the bed and tried to get his attention.  His eyes would not focus on me, he did not respond to either the nurses or the charge nurse.   He did not respond to pain, light or touch either.  His blood pressure was dropping and so was his oxygen level.  They up'ed his oxygen since since he is still on the ventilator and gave him a medicine to counteract the pain medicine he has been on.  Very slowly his eyes cleared and he responded to his name.  It was like walking into hell and back.  I stayed awake all night as I was terrified to go to sleep. 

The doctor this morning did another bronchoscope to clear up the fluid in his lungs, being on the ventilator prevents him from coughing.  The doctor does have pneumonia.  They currently have him on six antibiotics.  They have changed the dosage and combinations.  So far so good, Paul has not had a fever over 101.4 all afternoon.

This afternoon they did put in an arterial line to replace the one they had removed at the beginning of the week.  This is so that they do not have to stick him every time they want to draw blood.  This was a challenge as Paul still has the blood clots in either arm, but the doctors feel that they are low priority at this time.  They were able to do this with the help of using an ultrasound machine to guide them into the artery.  

The most important is getting Paul off the ventilator so that the repair in the trachea can heal.  There is a small leak in the repair and it is leaking air into the chest cavity, but the doctor feels that getting him off the ventilator will allow the repair to heal and close that leak.

On a very good note, Paul has slept a good rest filled sleep this afternoon.  His eyes have remained clear and he is alert when people speak to him and he can follow commands.

Tonight I will try to sleep.  With all the emotions and my brain not being able to shut itself off, sleep eludes me.

Good night and thank you for all the comments, well wishes, good positive energy and prayers.  I do actually feel the love and peace that is being sent to us.  It surrounds us with a beautiful energy that continues to keep us both hanging in there!

Jo

July 3, 2013

Paul had a Bronchoscop this morning at 6:30 am to clean out the fluid that is in his lungs.  There is a small leak in the repair. 

9:30 am they did another bronchoscope.  Dr. DeMeester would like him off the ventilator but the ICU doctor feels that he needs to be on it a bit longer to build up his strenght.

He has had a fever on and off all day.  The nurse put ice packs under each arm and behind his neck to help bring it down.  They now have him under a cooling blanket.

5:30 pm Dr. DeMeester made rounds and ordered a chest xray as he did not like the look of Paul's breathing.  The chest x ray did not show any damage to the diaphragm.  If they take Paul off the ventilator and he needs assisted breathing again, they will have to do a tracheotomy. 

They have Paul on several antibiotics and are doing repeat blood and lung cultures.  They do not know what is causing the infection.

8:00 pm tonight they did another bronchoscope.  I asked the doctor "Every time you do a Bronchoscopy, doesn't that open him up to infection?"  Dr. Tatum said "Yes, but we need to get the fluid out of his lungs, as long as he is on the ventilator he can not cough it up"  Seems like a catch  twenty two......damned if we do and damned if we don't.

Paul's temp is back up to 103 degrees.  After the last bronchoscopy his blood pressure dropped very low.  The doctor will be putting in an A-Line to give more meds.

I am going to climb in bed and hold him because I can not do anything else.

Jo

Tuesday July 2, 2013

Paul is still on the ventilator. They did unhook the ventilator for an hour to monitor his breathing.  After a short while he became tired and the breathing labored.  The ICU doctors and the surgeon met and decided that it would be good for him to stay on it over night.  Paul asked (wrote) the doctor  for something to help him sleep and a small increase on his pain medicine.  All the doctors agreed that a good night sleep would probably do him some good.  Respiratory Therapy will be in at 11:30, but after that he should be able to get in a couple of hours rest. 

Overall it was an okay day.  He still continues to feel hot and asks for an ice pack at the base of his neck and a icy cold compress for his head.   The room is actually cold but if it keeps him happy we are all okay with it.  The Plastic Surgeon who assisted in the Operation yesterday came to speak with us.  He stated they used some muscle from Paul's back and some muscle from the front of his chest.  They also cut away at a few of his ribs so that they could get in his cavity to make the necessary repairs.  The Thoracic surgeon did a bronchscopy this morning and he stated the repairs looked healthy.  There may be a very small hole, but the muscle should heal over it because it is so small no air is escaping from what they can see.  They also sucked up some of the mucus in his lungs and a small bit of blood.  Paul will have another  bronchscopy in the morning on Wednesday to check on the repair and suck out any more mucus that may develop overnight.  If it all looks good they will again try to let him breath on his own and hopefully remove the ventilator.  I am not pushing them to hurry on anything.  I'd rather they take it slow, check and recheck everything.  We have had enough set-backs on this hospital stay.  I am praying for the road to recovery to stretch out in front of us and we can start walking on it!  One baby step at a time if need be, but it will be a start.

We have always focused on the positive and will continue to do so. 

We are both going to get some rest tonight.  Paul especially needs the sleep to rebuild his stamina, and  me?  Well I'm just plain tired.

Good night my family and friends.

Jo

Post Third Surgery

Paul was in surgery for five hours.  Dr. DeMeester, the surgeon said that when they got in to look at the trachea, they found that it had deteriorated more.  It could have been because of the 5 weeks of radiation and the infection, he was not sure.  They took a piece of muscle from his back and another piece of muscle from his heart area.  They cut a few pieces of his ribs and patched up the holes in the trachea.

Paul is on a ventilator to help aid his breathing.  After surgery he seemed okay.  The surgeon stated he does not want Paul to be in any pain tonight and that he wants him to rest.  They will do a bronchscope in the morning to look at the inside and see how it is healing.

I went out of the room to get dinner and made a couple of phone calls.  When I came back Paul seemed out of sorts. He is having a hard time communicating because he can not talk.  Writing at the moment is a laborious task. 

As I was holding his hand I asked them to take his temperature.  It was 101.4.  So they put some ice under each armpit.  Paul seems to be struggling.  I asked him if he was in pain, he shook his head "No".  I asked him what was wrong.  He pointed to his head and his heart.  I asked him if he was worried, he shook his head yes.  I told him not to worry, we'll get through this.  He is clearly mentally stressed about all that has happened over the last three weeks.  I feel the hardest thing, is tat he knows he still needs another surgery to reconstruct an esophagus so that he will be able to eat normally.

He seems very agitated tonight compared to when he returned from surgery.  It is almost as if the reality of everything has hit him full force.  They have given him something to help calm him down and I will keep watch throughout the night.  All i can do is continue to express my love to him and enforce that "We will be okay"

I am praying that he finds peace tonight so that he can rest his mind and body.

I have hung up all the cards he has received so that he can look at them and draw good energy from them.

Thank you for the continued prayers, positive energy and love.
Jo

Third surgery in 3 weeks

Paul is currently in his third surgery since arriving at the hospital on June 11th.  The doctors are going to try to repair the trachea by creating a flap out of a muscle.  The trachea was damaged when the gastric pull-up deteriorated and caused a hole in his trachea.  They had patched the hole in the second surgery but the patch did not work.  Paul was breathing oxygen into his chest cavity.  The hole in Paul's trachea is preventing him for getting the oxygen he needs to survive.  Needless to say the esophagectomy was not a success. He has a couple of blood clots in his arm and near his neck, but the doctors are not concerned that they will cause any problems. 

I am concerned.  I am praying. 

He has been through so much and I hope that this surgery will lead him to the road to recovery, healing and home.  We do not know what the future will hold but we are determined to approach it head on!   Paul's spirits this morning were very good.  He continues to be positive in spite of all the set backs.  I continue to climb into the hospital bed and talk with him, hold him and give him all the healing energy I can muster.  

Paul went into surgery at 9:00 AM.  The surgeon got him into surgery as soon as he could, working with the Operating Room to "fit him in".  I have had three different doctors give me three different times regarding how long surgery will take, so.... I will not think about any of the times and be patience.

Not much more to say at this time.....

Hugs,
Jo