(continued from "The Journal - While You Were Sleeping")
Journal Entries - 1/15/95
"Lee Roy Ward
Our prayers are with you every second of every day. Please hurry up and get better real quick - we love you sooo much. Barbara Ward. Love you sweetheart."
Then my mom writes:
"Corin, Terry and Laura came, too. They brought you a card and the Nightmare Before Christmas movie.
Jeannie, Jayme and Jojann came, too.
You asked me to make Rice Crispy treats. I did at the Week's house.
The doctor told us this morning you will need the 'trache'."
I remember when Dr. Fountain told us that the major surgeries I was about to undergo could result in paralysis or even death. I also remember him describing the possibility of my needing a trache tube in my throat to help me breathe. All three, to me, were worst case scenarios.
It was Dr. Fox who came to me that morning, a few weeks after my surgeries. It was one of those rare occasions when someone, probably my nurse, had propped me up in a chair - I think to eat. I was learning to stand again. One of my lungs had collapsed, and until my breathing improved walking was not an option. Going home was not an option, either. A couple weeks earlier I had become upset with Dr. Fox when I realized I had tubing down my throat, preventing me from talking. From that day forward Dr. Fox would be direct with me, and this was one of those moments. His blue eyes twinkled with kindness, his voice equally gentle. But there is no good way to tell a child that they would need another surgery - and a hole in throat, at that.
A Typical Morning - Today, 4/17/09
I woke up this morning on my back. I felt the familiar, but uncomfortable tug of the tubing that runs from my ventilator to the trache tube in my throat. I was still exhausted, having stayed up way too late talking to an old friend, James McDuffie. But my brain was awake enough to remind me to stay still. If I moved, the condensation that develops in my tubing (keeping my airway moist) would have poured into my throat and caused me to choke. I hate when that happens. So I laid perfectly still until I was able to quickly detach the tubing from my neck. I shook the water out and turned on my side. I reattached it and closed my eyes.
I started to drift off, but suddenly I heard BEEP! BEEP! BEEP! "Ugh, stupid high pressure alarm. Just let me go back to sleep, please?" I turned back over and hit the 30-second alarm silence button. I sat up and took off the tubing. The balloon in my throat was inflated, like every night, blocking off the airway to my mouth and nose; I could only breathe through my trache. The ventilator alarming meant that it was using what it considered too much pressure to force the air into my lungs. Half awake and completely annoyed, I knew I had to do some problem solving if I wanted to go back to sleep. The meter is set to alarm at an airway pressure of 60. I watched the little arrow go up and down with each artificial breath. Sure enough, even when unattached, the arrow was rising all the way up to 20. That meant the HME filter, which creates the moisture I need for my airway, had too much water in it. I started to take the tubing apart. BEEP! BEEP! BEEP! Ugh! I hit the silence button again.
Journal Entries - 1/16/95
My mom writes:
"We now have met the doctor who will do the trache. Waiting to find out when.
Maria Morton brings Ria over to see you. The two of you watch the Nightmare Before Christmas. Then she brought over James McDuffie. He watched T.V. with you and Ria.
Physical Therapy came to set up your bed.
The anaesthesiologist, Dr. Vessal, came by. Says surgery will be tomorrow - Tuesday 10:15.
I ran over and sang with the Orchard City Community Chorus."
Today - 4/17/09
Now I held the filter in my hand and started smacking it against a tissue. Water sprayed out of it with each tap. When no more water would come out I attached it back to my hose. BEEP! BEEP! BEEP! I hit the silence again. Then I watched the little arrow, praying that it wouldn't rise. But it did, all the way to 15. Not much better, but I knew it was as good as I was going to get.
I briefly looked in the drawer next to my bed, hoping to find a dry filter. But I must have thrown all the old ones away. "Great." BEEP! BEEP! BEEP! "Ugh!" I hit the silence once more and then reattached the tubing to my throat. I turned on my side and thought, "Please, just let me go back to sleep..." But as I started drifting... BEEP! BEEP! BEEP! I sat back up and hit the button.
I took the tubing off, knowing what I had to try next - suctioning. A little extra water in my filter wasn't the only thing that would set off my alarm. Most likely I had congestion in my lungs as well. During the day I have to suction from time to time, but when my balloon is inflated it is a scary task. After all, it requires putting a suction catheter down my trache tube which, as I mentioned earlier, is my only airway when my balloon is inflated. Call me crazy, but I don't enjoy blocking oxygen from my body for any length of time. Still, if I wanted to go back to sleep I didn't have any other choice. I turned on my suction machine.
BRRRRRRRRRRRRRRRR!!!!! The loud motor hurt my ears - it was much too early for such a sound. I hadn't suctioned for several hours, so I used a little extra force to push the catheter down my throat. To my dismay, the first attempt didn't work. I pulled the catheter out and caught my breath. BEEP! BEEP! BEEP! I hit the silence. Then I tried again. This time I saw a little white mucus flow through the tubing. I stopped to catch my breath, now feeling light-headed. BEEP! BEEP! BEEP! As I hit the button I wondered if it was really a whole 30-seconds of alarm silence - it sure didn't seem like it.
I laid back down, reattached the ventilator tubing, and attempted once again to go to sleep. BEEP! BEEP! BEEP! "Ugh! You've got to be kidding me!"
I repeated this process for the next half an hour.
Journal Entries - 1/17/95
My mom writes:
"Well you have called for me to come down.
We are waiting for surgery at 9:00. They want to know if you are ready. They are running a little ahead.
9:15 they take you.
Grandma Kulp and Max come by around 9:45. 10:30 Dr. comes out and says trache went well. A little longer because of anatomy.
Dr. Fox is fixing G-tube, so taking a little longer. 11:30 you're out. Dad and I love you so much.
I called Aunt Ruth and Uncle Dick. Michael came to meet me at Denny's for dinner. Then we came back to feed you marshmallows and Jello.
I love you. Mom. (I called Pastor and McDuffies and Forbes)"
Today - 4/17/09
Anxiety took over, so I gave up on trying to sleep; I decided that I'd rather be tired with all three air passages open. I turned off the ventilator. No more stupid alarm for this morning. I deflated my balloon and put on my nasal cannula, instantly feeling a little relieved. However, I know it won't last long. During the night mucus gathers on top of my inflated balloon, and now the mucus flowed down and irritated my throat. I started coughing and turned on my suction machine. At least now I can still breathe during this process.
I turned on my computer, and amongst my thoughts was how much I hated having a trache. This reminded me that I needed to blog again today. Where had I left off? Oh yes - it was time to talk about my trache surgery. It seemed oddly fitting after such a rude awakening. The journal from my hospital stay was sitting at the end of my bed. I opened it up and turned to the time period surrounding my surgery. I read my mother's words:
"The doctor told us this morning you will need the 'trache'."
The "trache". I cringed. The quotation marks around the word "trache" stood out to me, taking me back to a unimaginable time when the all too familiar term was unfamiliar to us. I was reminded once again of the reality that this time my trache was permanent. This horrible morning was destined to repeat itself again and again. I thought about the fact that a trache is essentially a wound that will never heal.
And I worried that the same was true for my life.
(to be continued...)
A Special Note: I thank God for the lives of my Great Aunt and Uncle, Barbara and Lee Roy Ward, who signed my book. I couldn't help but think of them when I read their journal entry today. They were two amazing people, and I miss them very much.