Tuesday, October 13, 2009

Random Stories from the ICU #1

(continued from "'The Trache' - a Typical Morning")


Just a few excerpts from my mother's journal entries regarding her and my father's sleeping arrangements:

The pediatric floor fills up so they move dad and me to room 614.

We have no room because the hospital is full. Dad and I sleep in the dialysis machine room.

We now have room 614 again until we have to leave.

Dad and I had to sleep in 298 today. They sure have to move us a lot. The hospital is so busy.

It's 6:45 the nurse comes and tells me they need the room we were sleeping in. I come to find you awake. Good morning pumpkin.


I wasn’t in the ICU long before I started hearing stories from the nurses about a little girl named Kristy. Kristy’s 13 month hospitalization made mine seem like a brief visit. Her situation was my introduction to the crazy bureaucracy that is the health insurance industry.

Kristy suffered from something called Central Sleep Apnea. There’s a part of your brain that tells you to continue breathing while you sleep, but Kristy’s fell asleep right along with her. During the day she was a healthy young girl with a trache; laughing, talking, running, and playing. But at night she required constant supervision. If she were to fall asleep without a machine to breathe for her, or if she were to pull off her breathing mask unconsciously in the middle of the night, the result could be fatal. Of course her parents had to work and take care of their other child during the day, so they could hardly sit at her bedside every night. Her insurance would pay for all-night nursing. Well, most of the time. I don’t know how many times this happened previously, but when she was around five years old her health insurance decided that they would no longer pay for all-night nursing. Instead, Kristy, who was otherwise healthy, had to be hospitalized. And while most children get to stay in the pediatric ward upstairs with windows and bright colors and toys, Kristy and I were forced to stay in the white-walled ICU. The ICU where over 90 percent of the other patients slept all day and night, attached to machines while recovering from surgeries, injuries or illnesses. But because we both had traches, she and I required a smaller staff-to-patient ratio than the pediatric ward could offer.

Although I was several years older than Kristy, the nurses couldn’t help but compare our situations. Like I said, not many children stayed in the ICU. And they certainly didn’t stay for as long as we did. Thirteen months - I can’t even imagine it. Kristy was in kindergarten at the time, and I was told that a bus would arrive at the hospital in the mornings to pick her up and take her to school. Then she’d return in the afternoon and stay the rest of the day and night. My parents stayed at the hospital during my entire stay, moving from room to room, but Kristy’s parents could not. They couldn’t even visit every day.

I’m not sure when, but one day I heard that the famous Kristy, once again having insurance troubles, was returning. I don’t remember if I looked forward to having another kid around; you’d think that I would. However, we were at least five years apart in age and what seemed like 20 years apart in maturity. Except for my physical therapy sessions, I was mostly confined to my bed or to a chair. I enjoyed talking to my nurses, but as an only child I knew how to entertain myself. I colored and watched movies for hours. Kristy was a typical, healthy seven year old girl. She ran around the ICU, nurses chasing her back into her tiny corner. They were never mean to her, they loved her, but she had energy! She wanted to play! A couple times we colored together and or watched a movie while she chatted my ears off. Although she sort of annoyed me, we had a common bond; we were stuck in there together. And honestly, I felt sorry for her. They seemed caring enough, especially her mom, but I couldn’t understand why her parents didn’t visit every day. My mom tried to explain it to me, but it just didn’t make sense. So at first I tolerated the only playmate the ICU had to offer. And by the time I left I had grown to love her, too.

Another child came into the ICU while Kristy and I were there. This was a two or three year old baby named Oscar, also with a trache. I was told that he came to the hospital from time to time with pneumonia or bronchitis. He remained in a cradle during his visit. I couldn’t see his or any other bed from my room. But when he first arrived I would often hear his breathing machine alarming. I have always been an empathetic person, and I was overcome by anxiety every time it went off. Finally, I asked my mother to please go and check on him. Apparently, Oscar was quite the sneaky baby. He would wait until no one was near him and then tug at the tubing that connected to his trache until it popped off. The alarm would sound and his nurse would come running. He/she would find him smiling, proud of his accomplishment. They would softly scold him and reattach the tubing, only to play the same game a few minutes later. My mom returned laughing, and assured me, “Don’t you worry about that baby”. During one of my physical therapy sessions I asked to walk over to his bed and couldn’t help but laugh myself when I found a baby that I could only describe as so ugly that he was adorable. Giant blond curls and big green, pointed eyes with what I guess were birthmarks on both sides. He gave me a big, beautiful smile.

It wasn’t long until he got healthy enough to go home, once again leaving Kristy and I as the children of the ICU.

(to be continued...)

Tuesday, July 14, 2009

Stolen Moments

I'm sorry that I haven't blogged in a long time. I'm even more sorry that this entry will not be a continuation of my hospital story. But I just felt like writing tonight, so here it is.

Tonight I finished editing some pictures from Deborah's birthday party. These are such bittersweet days for me. On one hand I feel so blessed to be alive. I mean, I didn't HAVE to make it after that rapid response in the hospital last fall. My body could have rejected the new trache, the pneumonia could have taken me out, or heck my insurance issues could have kept me in there forever (or in a stupid care facility). But instead, there I was last weekend watching this little girl celebrate her fifth year of life. A little girl that I held the day she was born. I was there the moment Bill walked into the waiting room and told us all she was a girl and that they had decided to name her Deborah Ruth Yates. Much more, I met Bill and Lori when Lori was pregnant with Deborah's older sister, Charlotte (now 8).

And it's just too amazing that I am getting the opportunity to year after year watch them get older. Now they have Andrew, one year old. There's no stopping their aging process. But them getting older, while happy occasions, are also reminders that I am getting older. And I feel like every moment is a stolen moment. I feel like I'm cheating somehow... like God extended some sort of mercy on me that I don't deserve (why should I live when so many others wouldn't have made it?). And I'm humbled. And I'm thankful, SO thankful. And I'm terrified.

I'm trying to live every moment of it to the fullest. Trying to photograph every moment. Trying to contain it for... I don't know... others to see and smile and laugh and cry and...remember. Stolen moments. All of them.

I felt like this in Seattle, too. Standing on the top deck of my Aunt and Uncle's boat. I was piloting it around the waters, around an island! I WAS PILOTING A BOAT! Hooked up to oxygen, crazy for being near water with a trache, piloting a boat. The water, beautiful, the air crisp. But in the back of my mind all I could do was worry that no one was taking a good picture of it. No one was filming it. No one would possibly know what that moment meant to me. How could I ever describe?... I'm not even doing it justice now.

Yet another moment like this was walking into Plea for Peace last Friday and seeing Dave Rocha, someone who came to visit me in the hospital a few times. He had a massive heart attack this year and scared the hell out of all of us. We all rushed to the emergency room. He was unconscious, we were all waiting to hear what was going on. Fastforward to last Friday. There he was standing at the show, waiting with the rest of us. I hadn't seen him since before his heart attack (only family was permitted in his room) and it was shocking. I ran up and hugged him and he lifted me into the air a little. I felt like this was also someone who had received God's mercy. We were members of a special club. I joked in my mind about making a facebook fanpage for people who almost died but didn't. Tossed a few name ideas around. I found myself staring at him throughout the night. Sometimes I feel like a ghost - walking around this earth long after I should have left. I was surprised to be around someone with that similar... I don't know what to call it... an aura? lol, oh Bill will kill me for using that word. But I don't know how else to describe it.

Well, I could go on and on about all the things I am so thankful for... all the moments I would never have experienced, if things had gone differently. But I really must go for now. It's getting late. Thanks for reading.

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...)

Friday, February 27, 2009

The Story Adam Has Been Waiting For

(continued from "Behind the Smile")

When my Pastor, Bill, first recommended that I write a book about my life and become a public speaker, I was intrigued by the idea. I’d been looking to get out of the eight-to-five lifestyle for a long time. And although I am not happy about being on disability right now, it does offer me the opportunity to take on such a venture.

In the beginning I agonized – boy did I agonize! Where to start? Where to start? I had no idea. “Start anywhere” people would tell me, but that left far too many options. And I had no intention of starting from “My name is Alicia Messinger and I was born on January 31st, 1983….”

I looked to my husband for an answer and he suggested telling about how I learned how to walk again after my surgery. I told him I didn’t think anyone would be interested (of course I didn’t think anyone would be interested in any of my stories and I’ve been proven wrong daily). But he replied firmly “I want to hear about how you learned how to walk”.

So here we are, baby, 14 blog entries later. The rest of this entry is dedicated to you, Adam, for seeing something in me that I don’t see in myself.

As you may have noticed in the pictures I posted in my last blog entry, when it became apparent that I wasn't going home any time soon I was moved into one of the two actual rooms in the MSICU. But before that I was with the other patients, each bed only separated by curtains.

Now it is a complete myth that the hospital is a place for rest. Healing requires work. So despite the fact that I had just had major surgery, and despite the fact that I was still on heavy medication, and despite the fact that I was having lung complications, they couldn't let me just "lay around". It was time to get moving. Your muscles - use them or lose them!

It is also said that "A journey of a thousand miles begins with a single step." Well my saying would be "Before you can walk, you have to stand."

One day they came (I say "they" because I don't remember exactly who it was. Probably a physical therapist) and strapped me down to my bed. I remember the large strap across my legs with a giant buckle. Slowly, they began to tilt my bed upwards towards a standing position. The whole bed - it was crazy! On the side of the bed there was a device that told them how many degrees they were lifting me.

My legs felt weak, like noodles underneath me. I did not trust them or the strap over my legs to stop me from falling. With every degree I had to use more and more effort to support my own weight. They kept encouraging me to go a little further. "Just a little more, Alicia," they'd say. I became worried, asking them how much longer? When could I lay back down?

Finally they lowered the bed back down. I was relieved. They told me I did a good job.

This repeated every day. They tilted it a little more, then a little more. Once I was moved into the actual room I had a T.V. with some cable channels on it. The deal became "Stand fully upright for one half-hour while you watch the Fresh Prince of Bel-Air".

There I'd stand, strapped to my bed like Hannibal Lector (including my bi-pap face mask) watching the Fresh Prince. Counting the minutes until I could lie down again.

"In West Philadelphia, born and raised..."

(to be continued...)

Wednesday, February 25, 2009

Behind the Smile

(continued from "All the King's Horses")

When I was in high school one of my biggest heroes was Charlie Chaplin. Although he was a man of questionable morals, what I loved about him was that he was a "jack-of-all-trades" in the entertainment industry. He wrote, directed, and even composed music for most of the movies he starred in. One song that he is credited for composing is the famous song "Smile" from the movie Modern Times.

Long after the hospital experience I have been sharing with you was over, I found myself on an orange couch in front of a nice therapist named Paula. I started visiting her my junior year of high school and in one of our sessions I brought up some of these stories. I brought them up how I always bring them up - in an oddly casual fashion. I can see now that I had and still have a great disconnect in regards to this time period - a defense mechanism I am sure. I told her that for some reason I had a real desire to share these stories with people, but that no one seemed to want to listen for very long. I could tell it made them uncomfortable and I don't like people to feel uncomfortable. So I'd tell a little bit and then stop.

Now anyone who knows me well knows that the way I process through my emotions is by talking. So now that I think about it, it's really not surprising that I have unresolved feelings about my medical experiences if I have not, until now, really shared them with anyone. Once again I am crying. I am just so thankful for you, my faithful readers. Thank you so much for caring about me and my story. Many people have told me that they've learned a lot about me through my blog. But the truth is I've learned a lot about me through this blog. And I just wanted to take a moment to say thank you for helping me through this healing experience.

So I told Paula that I had some videos of me in the hospital that no one else had the desire to watch with me. I was so happy when she said she wanted to watch them. I brought them on my next visit and between sessions she watched them both. As we discussed what she had seen, she offered me her biggest observation: I was always smiling.

The pictures above are of the various devices that were used in the attempt to reinflate my lungs. The first being a tube up my nose. The second an oxygen misting device. The third is a bi-pap, providing positive pressure to my lungs. And last, the iron lung - something straight out of a sci-fi story. But no matter what I was dealing with; no matter if I was uncomfortable, hurting, scared; if a nurse, respiratory therapist, physical therapist, family member or anyone with a camera said, "Smile, Alicia!" I did. I would turn off all other feelings and smile. I remember one RT who would always say "Where's that beautiful smile?" and I'd deliver every time.

They tried to keep me happy all the time. And why wouldn't they? Who wants to see a little girl sad or in pain? But never once do I remember anyone asking me how I was feeling. How I was dealing with everything that was happening. During my most recent hospital stay I had a chaplain visit me almost every day to help me sort through things. Where was my chaplain then? Where was Paula then? Instead I had stuffed animals, a TV with VCR, a few cable channels, a couple cassette tapes - pacifiers for a big baby.

Anything to avoid the pain and anxiety.

But, heck, if someone had bothered to ask me how I was doing I probably would have said I was okay. I probably would have shut down and told them what I knew they wanted to hear.

And then I would have smiled.

SMILE by Charlie Chaplain

tho'your heart is aching,
Even though it's breaking,
When there are clouds in the sky- You'll get by,
If you
Smile through your fear and sorrow,
Smile and maybe tomorrow
You'll see the sun come shining through- For you.
Light up your face with gladness,
Hide ev'ry trace of sadness,
Altho' a tear may be ever so near,
That's the time you must keep on trying,
Smile- What's the use of crying,
You'll find that life is still worthwhile,
If you just smile.

(to be continued)