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.
