Home and healing

Finally, a few moments to sit down and do a quick update for all our wonderful friends and families.  Yes, my few moments today is at 4:00 am. 

We have been home 6 days and the reality of what is to come has slowly set in.  Paul is still very weak.  He needs assistance to climb the 2 stairs to get into our bedroom, to stand and to adjust himself in the bed.   On the bright side, he is home instead of being in a Nursing Home where he would not get the attentive care that he needs to accomplish a full recovery so that he can be ready for the next round of this battle with Esophageal cancer.

Sleep is a thing of the past for both of us, as his lungs continue to fill with secretions that need to be suctioned out every couple of hours when he is sitting up or hourly when he lays down.  I only wish the coughing and suctioning coincided with the timing for him to get his hydration water put into his jejunostomy tube, which is every 2 hours during the day.  But alas, it doesn't…so this makes for a very busy day and night. 

I've always wondered why men stopped going to the Barber Shop to be shaved.  It seems  much easier to have someone do it for you.  So to all the men who read this blog, a question… Is it easier to shave yourself or would it, if convenient, to have someone shave you?  I have improved with helping him become clean shaven and no, I've not cut him … not yet!

We are managing with all the medical supplies that are needed for Paul to continue his battle and stay on the road to recovery.  Our living room looks like a mini hospital room: a walker, an I.V. pole,  a suction machine, a small oxygen machine, boxes of gauze, I.V. bags, tubing, 5 pillows for added support when he lays on the couch and an array of syringes, tapes, and 2 dozen white washcloths.  The wheelchair is currently in the back of the truck.  There is only so much room in an RV and I think we are utilizing it all! 

They say necessity is the mother of invention.  Paul’s ostomy bags for his esophageal  neck fistula were suppose to arrive by Friday.  I was given 5 bags when we left the hospital.  Due to our Insurance number being written down incorrectly at the company who was suppose to fill the hospital order,  they never were delivered.  They said delivery would take place no later than Saturday afternoon.  So, on Saturday evening, I took one of the cohesive rings and attached it to a Zip Lock bag, cut a small hole and made a makeshift Ostomy bag.  I am hoping this idea will hold us over until Monday. I have 3 cohesive rings from the hospital that I didn't need with the ostomy bags.  We’ll see how long the makeshift bags will hold, keeping my fingers crossed.   Because of the esophageal fistula location, the proper ostomy bag holds in place approximately 24 hours.  Most ostomy bags, in a normal setting will hold for 3 to 5 days.  The one problem with the location of Paul’s is the enzymes in the saliva break down the adhesive.  With having the tracheotomy so close to the esophageal fistula, it leaves very little room for any additional adhesive to be added or space for positioning the bag with a full ring of adhesive. As the Ostomy Specialist at the hospital stated “This is a rare and unique case, so there is nothing out there made for this situation”  “We’ll just have to get creative!”  I guess she wasn't kidding!

 With all this we have the added dilemma that the incorrect suctioning catheters were delivered.  The company sent what they thought were the correct catheters, but because of the trachea repair, Paul can not have anything with a flat edge as it may inadvertently cause damage to the repair area.  I had a few round tipped ones from the hospital, so that is what we are currently using.   I've spoken with the company and they will be sending out several different samples to see what will be flexible enough to get down through the tracheotomy tube and yet not so thin that is will not be able to suction the thick secretions created by the healing and the expansion of the previously collapsed lung.

I have little uplifting quotes hanging around to help keep up the positive spirits.  I thought I was hanging them for Paul, but I find myself repeating them throughout the day.

“It doesn't matter how slowly you go, so long as you don’t stop”

“Trying times are not the time to quit trying”

“Two steps forward and one step back is still forward progress”

“Life is only traveled once, Today’s moment becomes Tomorrows memory. Enjoy every moment, good or bad, because the gift of life is life itself”

And of course…  “God grant me the serenity to accept the things I can not change, courage to change the things I can, and the wisdom to know the difference”

I've heard it said that God will only give you what you can handle.  God must think that Paul and I are very strong indeed!

  

Thank you to all the family and friends who continue to support us with their positive energy, good thoughts, my dinner, well wishes, prayers, love and those very important hugs.

Jo and Paul too!

P.S.  Now off to get some sleep before Paul wakes up needed suctioning or my 5:45am alarm goes off to remind me not to miss the 6:00am medications.

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