Wow- we made it through a whole day with no major obstacles to overcome!!!!!!
I did all his wound cleanings and dressings, took care of all his medication and insulin injections and got all of his feedings into him (the enormous catheter syringes are for attaching to the PEG tube to feed him...Thank God... I was starting to wonder what I was going to have to do with them...).
The suction machine is working well, the pain medication is making George sleepy and quiet, the phone is not ringing off the hook and I actually had 15 minutes to myself while it was still daylight!!!! A good day...

Once again I'm sitting in a hospital. Not in a big, efficient city hospital but in our small, hometown emergency room. My husband has just arrived via ambulance after coughing up a small,thin tube that was attached to the inside of his nose and is now hanging out of his mouth.
After getting him fed, medicated and situated on the sofa I'm in the middle of preparing his bedtime medications when I hear him start to cough. Walking into the living room I see him doubled over and holding his mouth. One look at him and I know something major is wrong. There is a very small pink tube in his mouth and each time he coughs it pops out - when he stops it slides back in. I grab the phone, hit 9-1-1, grab onto the pink tube when he coughs again and am on the phone with the surgeon when EMS arrives. Poor George is petrified. He's holding onto the tube with his fingers; without teeth he has no other way to keep this thing from disappearing down his esophagus. It's immediately apparent the EMT's have no actual experience with a laryngectomy patient. The first one on the scene tries to give George oxygen by using a face mask. Even after I tell him George is a neck breather the EMT is still attempting to place the make over his nose and mouth. They begin loading him into the ambulance as I am explaining what is needed. The squad members are now asking me what needs to be done. They did not know that he cannot have oxygen without humidification. These guys are wonderful but the one admits this is the first laryngectomee he's dealt with. As we ride towards the hospital I am peppered with questions concerning the multiple surgeries and care requirements. They are genuinely concerned and want to know what to do and how it's done.

Our arrival in the ER resembles a celebrity sighting. Everyone wants to see the patient with the tube sticking out of his mouth. Doctors and nurses surround George and begin firing questions at him. I get the "I'm talking to him" attitude until they realize he cannot speak. Then they all want to see the laryngectomy patient and ask questions. Even the nurse admits they don't see a lot of these. George's surgeon is now on the phone and while he is speaking with the attending ER doctor portable x-rays are take and blood is drawn.

George is coughing again. The nurse is trying to calm him and make him more comfortable but the coughing continues. Before anyone knows what is happening George reaches into his mouth and pulls hard on the tube. He has just pulled out an 8" long, clear, plastic tube (about 2" round)!!! The small pink tube is stitched to this plastic tube. What the Hell is this????? The nurse runs to get the doctor - she has no idea what it is either! Well, at least the coughing has stopped.....

Ahh - the things they don't tell us......the plastic tube is a sheath placed in the esophagus after the surgery so the throat doesn't close up while the new esophagus is healing. The thin, pink tube was stitched to it AND to the inside of his nose to help keep it in place. Ohhhhhhh - George is angry and so am I. We asked about the tube in his nose and were basically told not to worry about it. Ya' think they could've told us what it was and that there was another tube inside his throat?!?!?!? It sure would've made things a lot easier if we knew that the tube hanging out of his mouth wasn't life threatening! Jeez Louise, what a fright! Poor George...coughing unknown tubes out of his body, scared out of his mind believing he was going to die, rushed to the ER by ambulance.... All that could have been avoided if only someone had taken the time to answer our question and to explain what it was and why it was there......

He's Home!!!!! :-)

After much to-do between the surgeons, in-house doctors, etc. the decision was made to let George come home a few days earlier than anticipated. I was given a portable suction machine (that must be in the car at all times), a bag full of medications, laryngectomy accessories (a word I thought more pertained to belts, shoes and bracelets), appointment cards, a small novel of care instructions and told to bring the car to the front door.
I feel like I did when I brought my first child home from the hospital. Scared, excited and happy. Yippee!!!! He’s coming home!!!
I bundle my guy into the front seat - with the suction machine in his lap - throw everything else into the back seat and off we go. Once more the rain is coming down. The ride home is eerie. I’m in the car with my husband right beside me but I feel like I’m alone. There’s no amiable chatter, no discussion of the daily minutiae of our lives. The slap of the windshield wipers and the drone of the tires on the wet pavement are the only sounds in the vehicle. The silence is oppressive and uncomfortable. The realization of how our lives have changed is as oppressive as the silence.

While he was in the hospital I had his favorite chair brought into the living room from the den for him and I’ve set up the suction machine and humidifier next to it. He is now safely ensconced in his chair with “Mr Thirsty” in his lap and his humidifier fastened around his neck. His left arm, covered in bandages and doubly wrapped with an ace bandage, is nestled on a pillow. Ok…. NOW WHAT DO I DO WITH HIM?????
It has hit me that I am now solely responsible for his care.

I’d been given a quick ‘how-to’ on the use of the various machines and boy am I glad I paid attention. The hose has come off of the suction machine and George is in a panic. He cannot swallow at all so “Mr. Thirsty” is VIP equipment! A quick reattach and all is well again.
I cannot believe the amount of medications I need to keep track of. He also has feedings at 8am, noon, 4pm and 8pm, blood sugars to be taken before each feeding and insulin after each one. Everything has to be written down so we can keep track of calories, insulin, sugars, etc. Seeing as how I cannot remember to take a vitamin every day this is really going to be a mental agility test….sure hope I pass!!!!!
Now – if I can just get him out of the chair and into the bed….

The internal hospital machinery is preparing to spew forth its latest laryngectomy patient.
There is a small warehouse of equipment now residing in my living room. There wasn’t this much stuff needed when I brought a new life into the world! Oh my hell…what in blue blazes is all this stuff? There are cases upon cases of liquid (adult formula?) food. There’s a suction machine, a humidifier for his neck, tubing, jars, canisters, suction wands, more tubes, tracheostomy supplies we do not need (oops…somebody goofed), tape, gauze, sterile dressings, gallons of sterile water and saline solution, and a multitude of things I cannot identify. Can one person possibly need all these things? Will he really use all of this? Are they kidding me??? What’s this box…..huge catheter syringes???……for……?????????
And…in a house made for only 2 people … WHERE AM I GOING TO PUT IT ALL?!?!?!?!?!?!?

Ok- word to self....Self - do NOT stand directly in front of a laryngectomy patient when he tries to cough or sneeze!
My laughter fills the room, dances out the door and down the otherwise quiet, subdued hall. George had a coughing fit and like the good caregiver I am I tried to help cover his mouth with a tissue. Duh - while I was busy covering his mouth his stoma was busy clearing his lungs right onto my cheek. The poor man is mouthing "I'm sorry, I'm sorry," but all I can do is double over with laughter! I believe I have just committed my first caregiver faux-pas as well as learned my first laryngectomy lesson!

Radiation oncologist, chemotherapist, home care scheduler, speech therapist, nutritionist, house physician, surgeons, residents, medical students, RN’s, LPN’s, CNA’s. The alphabet soup of healthcare cycles through his room like planets orbiting the sun. They speak a language of healing, of health, of hope. They do not always speak a language we understand.
I am being educated in the art of being a pro-active caregiver. “Doctor Speak” is no longer being met with the polite head nod. Instead, I am stopping them, asking them to repeat, asking to have those words put into layman’s terms. My follow-up conversations now begin with “so, you’re saying….” With the exception of the chemotherapy oncologist, the physicians have all been more than willing to work with us and to make sure we understood what they are saying. Getting information from the chemotherapist is akin to driving at night with no headlights. She seems determined to breeze in, speed through the information she feels we need and make a fast exit out the door. My husband dislikes her and I do not disagree. She is cold, impersonal, supercilious and dismissive of George’s hearing loss. I am determined to have all of our questions about chemotherapy answered. There is always the possibility that I will block the doorway the next time she enters the room, cutting off her escape until we are satisfied our concerns have been adequately addressed. Hmmmmmm...............

My life has been put on hold. I haven’t been to work in almost 3 weeks. I spend my days at my husband’s bedside, learning how to care for him, taking care of him, handling things with him. The evening hours are filled with phone calls from friends and loved ones. Late nights are for learning how to fill his shoes; doing the bills, taking out the trash and for finalizing my father’s estate. Somewhere in between all this the laundry, house cleaning, grocery shopping, appointment scheduling, vehicle maintenance, and mundane tasks must be completed.
I am putting one foot in front of the other, taking one step at a time and pushing on to the new “normal” life we’re going to have. Some people say “Lord, give me strength.” I say “Women are like teabags. You never know how strong they are until you put them in hot water!” It has become my mantra, the affirmation of my strength.
I've decided that if life is going to push hardships at me I am going to push back - twice as hard and 3 times longer! This may change my life but this will not defeat me!!!!