Friday, April 17, 2009

The "Trache" - A Typical Morning

(continued from "The Journal - While You Were Sleeping")

Journal Entries - 1/15/95

"Lee Roy Ward
Norma Stephenson
Jeri Botwright
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.

Thursday, April 16, 2009

The Journal - While You Were Sleeping

(continued from "The Story Adam Has Been Waiting For")

"I know where it is, but getting to it will be hard," I tell my mother a few weeks ago. We were standing in my office, closet door open. In the closet were many boxes of various sizes (some quite heavy), carefully stacked. What I was looking for was, of course, in the large box at the very bottom. I didn't know this for certain, but where else could it be? The box, which I knew held elementary and high school memories, just made sense. I offered to wait until Danny (our roomate) or Adam got home to pull it out. But my mom, like always, didn't see any reason to put off the task. She lifted and moved boxes until finally she slid the bottom one out into the middle of the floor. I opened it up, rumaged through, and for a moment I thought it wasn't in there. Man. Where else could it be? But then suddenly I saw a glimpse of the familiar cover - a light purple corner. I cleared the other items aside and pulled out what we had been searching for. It was a hardcover journal that read Precious Moments at the top. On the front were two little children - one boy, one girl, in the Precious Moments art. My mom sat down on the floor next to me as I opened the book.

The first line read "This Book Belongs To Alicia Mellinger". It was dated 12-22-1994.

I turned the pages to find an entry that I remembered from my Uncle Steve (a close friend of my dad's).


"Hey Kiddo! I came to see you today and you were sleeping once again. I even stopped by and got a picture of a snowman painted on my face. Your mom took a picture for you. It's just for you sweetie! If you ever want advise about boys come ask your uncle steve. Dads aren't too good about explaining that sort of stuff (especially yours!). I looked at you 1/2 hour after your operation and you looked as cute as a princess. I know what they are, I married one... I was thinking about you all day long and said special prayers for you. They must have worked, you are looking great and the doctors say all is OK. Now, what can I get you? You already have a special friend in me. How about a dance? I'll bring the music and cider next visit. Take care - I love you. Uncle Steve. And your Dad eats like a pig!"

We continued flipping through the book. I stopped at two entries by my friend Katie and her parents. She and I have been friends since kindergarten. Then I read a short entry by my mom, who kept amazing records throughout the book.

"Hi Alicia. We prayed for you all day today. You are such a special girl that we had to come see you with our own eyes. You'll be happy to know you look very good! (Don't ever worry about putting on any weight, because you'll look great!). We met Dr. Singleton in the hallway and he said the operation was long and difficult, but that you were doing good. Praise the Lord! We are coming back on Christmas day to see you again. We love you. Love, Eric & Joann Forbes (and Colleen)."

"Dear Alicia, I just came from where you were (did I spell that right?)with your dad. Everyone was saying that you look great! Your mom was saying to my mom how your one nurse is assigned only to you. This book is really neat. You left your card at my house so I brought that with me along with a card I forgot to give you. The nurse was just taking your temperature so I left to sign the book. Your Friend, Katie Forbes."


"Daddy read to you four chapters of Charlotte's Web. Got up at 5:00AM left you about 9:00AM. Love, Mom."

A few pages later, another entry by Uncle Steve...


"Hi Honey - I came on Christmas Eve to tell you how much I love you and wish you well. But! You were asleep again. I heard you smiled today. See, I told you you would be OK cookie. I love you and miss you. Have a great Christmas. By the way, your daddy is still ugly as hell but really does love you - don't tell him, though. Uncle Steve - HO-HO-HO."

I continue reading, but start to become a little emotional. It's hard to wrap my head around the idea that the world was going on around me while I lay dorment in my hospital bed. It's also overwhelming to see all the names and entries of people who came to visit. So sad that I don't see or talk to these people as much as I would like to. So thankful for their love, concern and their prayers.

I hand the book off to my mom, who continues to read for a while. I sit next to her, quietly sorting through my tangled thoughts and feelings.

(To be continued...)