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