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.