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)

Monday, February 23, 2009

All the King's Horses

(continued from “Rude Awakenings”)

"Humpty Dumpty sat on a wall,
Humpty Dumpty had a great fall..."

My lung collapsed. And while I can explain to you the physical repercussions, which were life-threatening, there was something scarier about it to me.

My doctors; the professionals with the answers and the plans; the ones I trusted to the point of allowing them to cut my entire body open like a fish; the ones I allowed to fuse metal rods to my spine, a procedure that could have led to paralysis or death. These great men that I loved and trusted – how could it be that they of all people would now have no definite answers for me?

Aren’t doctors supposed to know everything? Isn’t that their job?

And aren’t parents supposed to be able to tell you that everything is going to be okay?

Wasn’t I supposed to only be here for 4 to 6 weeks? I remember them saying I was going to have a surgery. I remember them saying how long I’d be in the hospital. But when were they going to tell me what happens afterwards? When was I going to wake up from this nightmare? When was everything going to go back to how it was before I ever came to this crazy hospital? When was I going to be normal again?

I was so naive. “When was I going to be normal again?” What a stupid question. It just shows how little I understood about what was going on.

And you know what’s really pathetic? I’m crying right now as I write this, because I haven’t learned a thing in all these years. I’m still waiting to “return to normal”. Every year that goes by I have to face a new reality – a new machine to sleep with, oxygen 24/7, and now for the second time in my life, a tracheotomy. That means suctioning, new machines, new procedures, new employment goals, new fears about what “attractive” means – it affects everything.

And even though I know, I KNOW, that these are the realities of the deterioration of my condition, I still keep waiting for that day when it all just goes away. I even asked my new lung doctor last week, “Do you think I’ll have a tracheotomy forever?” He laughed and said “No, just until you die.” I was crushed. But why? Why can’t I accept what has happened and is continuing to happen to me?

I think it goes back to that blog I wrote a while back… "It Shouldn't Be Like This..."

But it is. That’s where I am and that’s where I was at all those years ago. It all happened so fast and there I was, facing a new dilemma, and all I wanted to do was go home and go back to school. It felt so far away – like I hadn’t been there in years.

And, to my horror, “All the King’s Horses and All the King’s Men…” didn’t have any idea how to re-inflate my lung again.

(to be continued)

Wednesday, February 11, 2009

Rude Awakenings

(continued from “48 Hours”)

No sooner did I fall asleep than hospital staff of all sorts started waking me up.

First it was who I referred to as the “vampires”. They came for my blood in the early hours of the morning. I’d wake up from a sharp pain penetrating my right wrist. My ART-line wasn’t flowing as easily as it had when it was first inserted. So the vampire would wiggle it and wiggle it until they were able to draw an adequate amount of blood. Half angry, half in tears, I’d beg them to stop. It hurt so badly. But they couldn’t, of course, until they got what they needed. I still have the scars to this day.

Aside from blood taken from my ART-line (a line tapped directly into an artery), I also had regular blood draws. At this stage, vampires would show up 3 times a week or more. I’d open my eyes and see them walking down the hall towards my curtain, plastic carrier in tote, full or their devices of torture. You would think eventually it would become, I don’t know, normal or something; like I would accept this as an unavoidable part of hospital life that really – once it was over – was not a big deal. But instead I would squirm as they approached, cry throughout the process, and immediately dread the next visit.

Next to wake me up were the Respiratory Therapists. I had no concept of what having a “collapsed lung” meant – I don’t even think they told me that I had one at first. They just started randomly waking me up and shoving what I remember as a mask made out of a black leather-like material onto my face. Half-asleep, eyes barely open, I’d follow their instructions to take deep breaths in and out. I’d drift back to sleep during the process, not understanding (or caring about, really) the importance of what they were trying to do. After a few minutes, with a sudden jolt, the RT would sit me upright in my bed and instruct me to cough. Only it was more like “OKAY ALICIA, NOW COUGH!” Head still fuzzy, I’d think “Why are they doing this to me?” They’d yell again “COUGH! COUGH HARD!” I’d give it the best I could. “COME ON ALICIA, COUGH!” I could tell it wasn’t enough. And then they were gone. This repeated throughout the night.

My mom would hold my hand each night until I fell asleep. Her trick to knowing I was fully asleep? She would watch my heart monitor. Once my pulse slowed to around 80 BPM, she knew I was out.

But inevitably I would be woken up or wake up on my own, and no matter what time it was I wanted my mom back right away. I would call the nurse, and ask if she would please get her. The nurse would try and reason with me, “It’s 3 o'clock in the morning, Alicia; you should let your mother sleep.” Sometimes my favorite stuffed animals, or nurses that I really liked could soothe me back to sleep. But I had so much anxiety; most of these nights I would beg and beg until finally they would call up to my mother’s floor. She couldn’t get to me fast enough. Time seemed to stand still until I’d see her, exhausted but never cross. She’d just sit down and take my hand. I’d watch White Christmas. She’d quietly watch my heart monitor.

Thump, thump, thump…thump…thump…….thump…….thump……

(to be continued)

Friday, February 6, 2009

48 Hours

(continued from "A Small Act of Defiance")

It was the beginning of January, shortly after the second half of my spinal fusion. I was slowly emerging from my “controlled coma” and the transition was incredibly hard on me, both mentally and physically. My dream world and reality were at war with each other – it was scary. I remember literally going through withdrawals, thinking and saying some crazy things. I told one nurse, “to just stick your needle in my arm and kill me! I know you can! Just kill me!” I wonder what she must have thought of me.

I couldn’t sleep. I was afraid to sleep, my body wouldn’t let me. I watched movies over and over; mostly White Christmas and Snow White and the Seven Dwarves. Twenty-four hours passed – scene after scene, song after song. As soon as a movie ended I asked them to rewind it and play it again.

I was becoming more aware of the people around me, especially my mom. I never wanted her to leave my side, not even for one moment. I didn’t want her to eat. I didn’t want her to use the restroom. I was terrified and completely self-absorbed.

Now my father was far from perfect, and was often verbally abusive when I was growing up. I followed my mother’s lead, spending many years walking on eggshells around him, watching every word and movement, afraid he would “blow up”. Even today I must fight this tendency, despite knowing that, in most cases, the only power someone has over you is the power you allow them to have. I also have a deeper understanding of where anger comes from, having developed a short-temper of my own. Therefore I have forgiven much of my father’s past behavior. We have a much better relationship, although it’s a relationship that we are still trying to figure out.

Maybe it’s the co-dependency in me speaking, but even as a child I could see him wrestling inside himself when he tried to talk to me or spend time with me. I could feel his disappointment when an activity or conversation didn’t go as he had planned. Unfortunately he would usually outwardly blame me, my mom or, heck, women in general. We were “all the same”. But the fact is, despite his flaws, I hope my father is happy to hear that I’ve always known he loves me and that he was doing his best.

During my stay in the hospital my father continued commuting each night to work in San Francisco. During the day he’d sleep in whatever hospital space was available. He would spend some time with me, stepping outside frequently to smoke a cigarette. My mother quit her job to spend every day (and most nights) caring for me.

But there was one night – my second night of no sleep – that I asked my dad to stay with me. And, to my surprise, he called his work and took the night off. He stayed right at my side as my body waged war against the chemicals inside of me. I hadn’t felt so comforted by him since I was a toddler. That’s actually how old I felt, lying there, watching Snow White and the Seven Dwarves with him. Like a little baby. I’d nod off to sleep, then jerk awake. He’d still be there. I’d ask “How long did I sleep that time?” He’d answer calmly “Just three minutes. Try to go back to sleep…” This continued throughout the night.

Finally, after being awake for 48 hours, I fell asleep, assured by my father’s presence that I would be okay.

(to be continued)

Monday, February 2, 2009

A Small Act of Defiance

(continued from "One Little, Two Little, Three Little Indians")

Last year I went and listened to an amazing speaker named Tom Pomeranz. One of his maxims is "An institution is not a place - it's a state of mind." Pomeranz believes that people who are placed in environments in which they feel powerless will often take control of anything they can. And most of the time, these "acts of defiance" do not make a whole lot of sense to anyone else.

One night I woke up and saw a nurse sitting at the end of my hospital bed. She was silently writing in my chart.

I was wearing a large plastic oxygen mask that blew a cool mist into my face. It was attached by an elastic band and the long hose extended off the side of my bed. In my own act of defiance I took off the mask and threw it to the ground. The nurse got up and put it back on.

She sat back down and began charting. Again, I grabbed my mask and tossed it aside. She shot me a look. She got up from her chair and attached the mask back in its place, this time scolding me. She warned me not to do it again.

She sat down. I waited a few moments and then tore off the mask and threw it to the floor. But this time she did not budge from her seat. Instead, she continued writing.

I asked “Nurse?” She did not answer.

After a moment I urged again, “Nurse?” No response. I could hear misting in the distance...

I began to panic. My breathing became rapid.

Fear in my voice I repeated, “Nurse?” Without looking up she calmly - but sternly answered, “You’re okay.”

My heart was pounding, increasing as every second ticked by. I was surely going to die from oxygen deprivation!

Oh my gosh...Oh my gosh... I NEED MY OXYGEN!



After a few minutes she got up and gently placed my mask back on my face. My heart rate and breathing instantly returned to normal. My panic attack, of course, had been entirely self-induced. She returned to her chair.

I closed my eyes and breathed in my oxygen.

And, finally, she was able to finish her paperwork in peace.

One Little, Two Little, Three Little Indians...

Also titled: “Stories They’ve Told Me”
(continued from “Alicia in Wonderland”)

Many people have told me, “Your last blog was really weird,” since I wrote it a few days ago. To this my only reply is “Yep – that’s what morphine can do to you!”

As I mentioned several blogs ago, my surgery was performed in two parts; the first on December 22nd and the second on December 29th. My back was cut open from the top of my neck all the way to my hips and also around my right armpit. They had to remove parts of my ribs on my right side. I was intubated (a tube placed down my throat so that I could receive a machine’s assistance to breath), given a G-Tube (a tube in my stomach that they could pump food into) and given an ART-line (An IV in my wrist that connected directly to my artery). During the second surgery they attached metal rods to my spine. Unfortunately, during one of my surgeries, one of my lungs collapsed (filled up with fluid).

The morphine, although frightening in of itself, was intended to shield me from these painful realities of major spinal fusion. I was in what is called “a controlled coma”.

My husband and I are both heavy sleepers in general. People will have entire conversations with us in the middle of the night that we will have absolutely no recollection of the next day. So add medication on top of this and “Good-night Nurse!” Only through pictures, videos, a journal and stories that others have told me do I have any idea of what actually took place while I was in dreamland.

Apparently when I first woke up I was furious with Dr. Fox. He had not told me that I wouldn’t be able to talk, due to the intubation. Not being able to verbally communicate my needs made me extremely frustrated. I think at first Dr. Fox thought of me as “just a child”. But I wasn’t a typical child. I was a child that had to deal with grown-ups and grown-up issues on a regular basis, due to all my medical needs and my extremely co-dependent relationship with my mother. Since then Dr. Fox has always told me how it is – even if it is scary.

At one point I was trying to ask my parents something, and they simply couldn’t understand. I became upset, trying over and over to communicate with them to the point of tears. Finally they handed me my stuffed animal, Lambert. I demonstrated my request and they realized that all along I had only wanted a hug! I was terrified and wanted constant human touch, especially someone to hold my hand. My mother sat at my side for hours every day.

Throughout my entire hospital stay my parents remained at the hospital. We lived over an hour away, so my parents hung their clothes and kept their necessities in the backseat of our car. They slept in various hospital rooms – switching almost daily, as the rooms were needed. My dad, who continued to commute to San Francisco every night, sometimes had to sleep in the dialysis room during the day, if no others were available. We had just purchased a house in Lathrop, CA, but my parents only returned there once or twice during my entire stay, and that was just to prepare for my eventual homecoming.

Christmas passed. New Years passed. Many visitors came. I don’t remember any of it.

Two things that puzzle me and crack me up about this time period was my hallucination about my mother and the nurse wearing “war paint” (refer to the blog “Alicia in Wonderland”) and a story that my mother told me (and I have repeated on a number of occasions because it is so funny to me).

While I was still on some medication, my physical therapist came for our first session. As he approached my bed I yelled out “STAY AWAY FROM ME, YOU INDIAN!” (What was it with me and Indians??). He stopped, shocked by this coming from a harmless looking little girl. My mom laughed and asked me, “Well who are you?” I replied matter-of-factly, “I’M JOHN WAYNE!”

That’s right, don’t mess with the Rooster.

Saturday, January 31, 2009

A Birthday Blogging Break

I just wanted to let everyone know I'm taking a little break from blogging. I didn't continue my story yesterday and I probably won't today either. But I promise I will resume tomorrow!

For those of you who don't know, today is my 26th birthday. When I was born my parents were told that I would probably not live long - a day, a week, a month, a year, etc. Then in the summer of my 8th grade year I was reading a letter that my best friend at the time, Tarah, had written to a boy we met off the internet. She told him she was worried because she had heard a friend of hers would only live to be 20. I was concerned, because all of her friends were my friends as well, so I asked her "Who?!" She replied sadly, "You." I guess her mother and my mother had been talking, and that's what she told her.

My 20th birthday of doom was burned into my brain. I asked Dr. Fox and he didn't exactly confirm or deny this exact year, but just reminded me that I am a delicate case and that the reason we moniter my health so closely is to hopefully prolong my life as long as possible. I asked him how I would die. I mean, how does someone with my disorder suddenly die at 20? He said I probably would someday get pneumonia and just wouldn't recover. Scared, I asked him if he thought I could ever have children. Surprisingly, people ask me this question a lot. His initial response was to remind me of how extremly winded I get just walking up a flight of stairs. He was honest with me and said that I may be able to have one child - and even that would be extremly risky. I would have to bed on bed rest a majority of the time and definitely have a C-Section.

I look back at my life immediately following this information. High School is confusing enough of a time without all this looming over your head. I mean, how do you plan for the future when you don't think you're going to have one?

Since my 20th birthday I have felt like I am living on borrowed time. And every year feels like a huge acheivement. Some people hate their birthdays, but my birthday is always a celebration of God's love and mercy. I am here. I have a family who loves me. I have more friends than I can count. I have a wonderful husband. I have a beauitful new house. My health is questionable, I did have a huge scare last year and spent another two months in the hospital. I may not like having a tube in my throat. The economy is definitely putting a strain on our finances (like everyone else) on top of tons of new medical bills.

But I'm here. And I'm 26!

And as long as I'm here I know God has something he wants me to do for him.

Some things I have been thinking about this morning:

Be thankful for every moment of every day, even the "bad ones"
Always tell people you love them
Don't be afraid to reach out to people, even if you haven't spoken to them in a long time
Know that ANYONE can change if they are willing - God is awesome like that
Say you're sorry when you are wrong, and don't worry about whether someone accepts it or not
Stop worrying about changing others - change yourself

And enjoy your birthday every year, because you were born for a reason and remain on this earth for a reason as well!

Thank you for reading about my life.

"When we trust our lives to the unseen but ever-present God, He will write our lives into His story and every last one of them will turn out to be a great read. With a grand ending" - Beth Moore

Thursday, January 29, 2009

Alicia in Wonderland

(continued from "Testing, Testing, 1, 2, 3...")

Cheshire Cat: Oh, by the way, if you'd really like to know, he went that way.
Alice: Who did?
Cheshire Cat: The White Rabbit.
Alice: He did?
Cheshire Cat: He did what?
Alice: Went that way.
Cheshire Cat: Who did?
Alice: The White Rabbit.
Cheshire Cat: What rabbit?
Alice: But didn't you just say - I mean - Oh, dear.
Cheshire Cat: Can you stand on your head?
Alice: Oh!

The night before my surgery my parents and I met my Uncle Lee at McDonalds. My Uncle had flown in from Ohio and when we met up with him he was sitting at a table, typing on his laptop. I had never seen a laptop before, but it didn’t surprise me because I’ve always thought of him as a computer genius. At least that’s how my dad portrayed him. He created software and owned his own company. I didn’t see him much, no one in the family did, but we did sometimes talk on the phone. He loved to ask me how Roo was, Roo being my imaginary pet Kangaroo who lived behind the tree in front of my house. I would laugh – what kid doesn’t like an adult to take their imagination seriously? And I had quite an imagination.

We all went to the hospital to check in. It was December 21, 1994, and my surgery was scheduled for the next morning. My mother helped dress me in a hospital gown and robe and I walked around through the halls for a few minutes. I remember watching goldfish swim around in a tank. My last recollection before my surgery was sitting in my hospital bed, my Uncle Lee in a chair next to me. He and I were playing with the bed’s buttons, moving the feet up and down and whatnot. I faintly remember one more test in which they attached some electrodes to my head and body and then…

Caterpillar: Who... are... you?
Alice: Why, I hardly know, sir. I've changed so much since this morning, you see...
Caterpillar: No, I do not C, explain yourself.
Alice: I'm afraid I can't explain myself, you see, because I'm not myself, you know.
Caterpillar: I do not know.
Alice: I can't put it any more clearly, sir, because it isn't clear to me.


I am awakened suddenly. The room is pitch black except a bright flashlight shining directly in my eyes. I can barely see the forms of two people leaning over me. “One pupil is larger than the other,” said a voice. Then someone asked, “Alicia, do you know where you are?” I had no idea.


Next I woke up in a large glass tube. A nurse and my mother were standing above me. They had red paint smeared across their faces. I asked them, “Why are you wearing war paint?” They looked at each other and laughed in confusion. One asked, “What do you mean?” I said, “Like Indians!”, frustrated that they were laughing at me. They continued to look confused. “We’re not wearing war paint”.


It was night time and I was outside a warehouse. There was a deep fog, but I could see a bright green light shining in the distance. It moved closer until I saw it was a lantern. An old man was carrying it, with a leash in his other hand. At the end of his leash I could barely make out a Rottweiler, because its fur was as dark as the sky. They walked past me, but didn’t give any indication that they saw me.

My eyes popped open and again a bright flashlight shown in my face. This time Dr. Fox was standing with the nurse. He smiled and asked, “Do you know who I am?” I said “Of course, you’re Dr. Fountain.” He and the nurse smiled at each other. I knew something was wrong.


I woke up. There was no one around. No family. No doctors. No nurses. My bed was surrounded by curtains that were white with colored stripes. My little area was bright, as though the sun was somehow shining inside of it. A giant, fancy paper mobile came down from the ceiling. Like magic, a flap popped out that said “Dr. Stephen Fountain!”


I woke up again. Everything was bright. Dr. Fox and Dr. Fountain were standing in front of my hospital bed. I was convinced that their stage names were Bing Crosby and Danny Kaye from the movie White Christmas. I asked them to perform a number for me, and they tap-danced to the “Sisters” song.


This time when I woke up there were giant bouquets of flowers around me. I thought it was my funeral. A metal triangle descended from the ceiling. I looked over and saw a picture of the Virgin Mary with some writing I could not understand. I was terrified, knowing that I was about to be hung by this triangle.


I woke up and I was only a pair of legs. I was the hooker, Kat, from Pretty Woman. Julia Roberts was at the nursing station in front of me, explaining to the nurse what had happened. I was horrified and thought, “How can I still be alive if I’m just a pair of legs?”


I could hear the nurses around me, but I couldn’t see them. They were whispering behind the curtains, sitting behind computer screens at the nurse’s station, intentionally hiding their faces from me. They were plotting to kill me. One walked past me, carrying a giant painting of Elvis so that I could not see her. Another nurse jumped through the Elvis painting as a distraction. I was helpless and confused. A baby Ernie doll (from Sesame Street) was lowered down from the ceiling. I knew it was a trick.


It was bright in my area again and this time my parents were there. A woman that my father had previously dated arrived and my parents were surprised to see her. After she left my mother began to cry, but not about anything related to this woman's visit. She was crying in pain because she had a horrible headache. She said she couldn't take it anymore, and she had to tell the truth. She pulled out her hair from underneath her shirt and it rolled down her back all the way to the floor and continued to roll along the floor for several feet. It was beautiful. We were all in shock that she had managed to keep this secret for so long. She confessed that when she was a child she was on her way to get her haircut. However, my Uncle Dallas loved her hair so much that he convinced her to tuck it down the back of her shirt so that no one would know how long it was and she wouldn't have to cut it. She had kept this secret for over 30 years, even though carrying the weight caused her incredible pain every day. She cried and my father hugged her. He assured her that everything was okay, and they went to get her hair cut.


I woke up and my parents were dancing around, putting on a show for me. The curtain surrounding me unrolled, and as it unrolled out emerged the woman my father had previously dated. She was tucked into Angel wings, and as the curtain unrolled to reveal her as sort of a grand finale her wings opened.

More darkness and too many more strange hallucinations and half memories to mention in one blog.

Then finally, my first real memory following my operation.

Another flashlight in my face. The nurse removed the light and my eyes readjusted until I could see her more clearly. I asked "What day is it today?" She said "January 4th". Worried, I said "It's my mom's birthday! I need to get her a cake." The nurse called down to cafeteria and then ordered one slice of cake. There was an unlit candle on the top. The staff propped me up in a chair and then called my family from the waiting room. My mother walked in. In a meek voice I began to sing:

"Happy birthday to you...Happy birthday to you..." I barely finished the song before running out of breath.

My mother's eyes filled up with tears and she kissed me again and again on the forehead. Not wanting me to worry, she assured me over and over that she was crying "happy tears".

I'm crying a few at this moment, just thinking about it.

(to be continued)

Wednesday, January 28, 2009

Testing, Testing, 1, 2, 3...

(continued from "A Good Man")

I was in the 6th grade and my doctors were preparing us for the big surgery. It was moving so fast, there was no time for me to sort through my feelings. I have scattered memories of appointments, tests and then it was time.

My spinal fusion would actually be performed in two parts, one week from each other. Dr. Fountain said that I would be in the hospital approximately four to six weeks total. We joked about putting a small basketball hoop on my hospital room door to help pass the time.

I can only remember a few of the tests that preceded my operation. One of which was due to my lack of appetite. Today I am only 4ft2in tall and weigh around 71lbs. Back then I was virtually the same height, but weighed only 50lbs. I look at old pictures of myself from that period – always with a big smile, but frail looking. I was burning so much energy just to breath, and I never ate much at one setting. I still eat like that – “like a bird”. But there was some concern that maybe my stomach was abnormally small. So one test involved drinking the most disgusting liquid I had ever had. The consistency may have been like a milkshake, but this tasted like cement. And they wanted me, a person who still takes tiny sips of anything to drink an entire cup of this “barium” – Blah! It took forever. My mother sat in the hallway with me, encouraging me to keep drinking. Finally I drank enough to satisfy the technician and I laid down on the exam table. The room was dark except for a monitor that was mounted up in the air. On it I could see my digestive system at work. I thought it was pretty cool. Not a show worth drinking a cement milkshake for, though.

A few days prior to my surgery we went to the hospital for some more testing. They cut my arm with a small blade and then timed how long it took to clot. They took some blood and asked a lot of questions. Then we met Dr. Fox in the MSICU (Medical Surgical Intensive Care Unit). He explained that this would be where I would recover immediately following my surgery before moving upstairs to the pediatric ward. The MSICU only had two individual rooms. The rest of the area was open with curtains separating one bed from another. All of the patients were sleeping, the only noise from their "stalls" being the beeping and alarming of machines.

We talked for a few minutes, during which time my mom informed Dr. Fox about my allergy to tape. After my surgery when I was two I broke out with two huge rashes, one on each cheek, where they had taped my oxygen tubing. After hearing about this experience, Dr. Fox walked to a station in the MSICU and grabbed several rolls of tape; paper tape, plastic tape, a tape called Transpore, etc. He cut short strips off each roll and placed them on my arm. He instructed us to keep them on for a day or two and see which ones (if any) my skin would have a bad reaction to. A couple days later small rashes started to develop under all of them except the Transpore. To this day that is all I will let nurses use on me.

The only other thing I remember about the time right before my surgery was going to get my hair trimmed. I had long hair that reached all the way to my hips. My parents and I went to a lady's home to get our haircuts and I remember admiring this Christmas decoration she had. It was a little boy - I think an angel - playing a flute or something. She saw me admiring it and gave it to me. This visit felt like part of a strange ritual. I was preparing for ceremony in which I was the sacrifice.

Everyone's actions made me feel like an inmate on death row. Something horrible was about to happen to me that they couldn't stop. I couldn't stop it either, even if I asked nicely.

But I'm pretty sure I could have gotten anything else I wanted.

(to be continued)

Tuesday, January 27, 2009

A Good Man

(continued from "Numbers")

His first degree was in engineering. This is an important thing to know about him, because I believe it is what makes him more than a doctor. He is an inventor, a problem solver, a man who can inspire hope in people who have been told that all is lost; the definition of an "out-of-the-box" thinker; a warrior; a good man.

Dr. Richard Fox. We had never heard of him, but as I said before we trusted Dr. Fountain and Dr. Fountain had recommended we meet this Pediatric Pulmonologist. He impressed us during our first visit. After viewing my chest x-rays and my files, Dr. Fox gave us startling news – I did not have asthma. My previous pulmonologist had diagnosed me with asthma, and due to this diagnosis I was performing daily breathing exercises, taking some sort of pill, and puffing away on inhalers. The reality, which he shared with us, was that all of my asthma-like symptoms were a result of my spine literally crushing my lungs. We had been wasting energy, money and, most upsettingly, time. I was confused. My dad was angry. I’m not sure what my mom was feeling.

A spinal reconstruction was overdue and, because of that, the risks were increased. I was told that I could become paralyzed or even die. There was also a chance that, due to my breathing issues, I could need a tracheotomy.

I think my brain shut down. These potential consequences seemed imaginary to me. The surgery sounded imaginary. It was all too surreal. Looking back I have a jumble of memories. Time moves forwards and backwards without warning. For that reason I apologize if the next stories I tell (preceding my surgery) are out of order.

I do know it was around this time that my mom and dad’s fears took form in the question, “Alicia, is there anywhere in the United States that you would like to go?” My dad worked, and still works for United Airlines and in those pre-9/11 days we could fly for free. I had no answer for them. The reality of what they were really asking was too much for me. “Alicia, where do you want to go before you die?”

They suggested Disney World.

But we wouldn’t end up traveling anywhere. There simply wasn’t time.

(to be continued)

Articles about Dr. Fox
My Favorite one

Monday, January 26, 2009


(continued from "Infinite Chances")

For years my parents bought what I call "old clunkers". We'd buy a car that seemed to only cost a few hundred bucks and then it would stall a few hundred times before dying. Then we'd get a new one. At one point we had two trucks sitting in our driveway; one was orange and the other was blue. The back of the orange one rubbed against the tires, causing damage. The engine of the blue one simply didn't work. So my father switched the backs of the trucks, leaving us with an orange truck with a blue back and visa versa. One of the doors on the orange front didn't open and close properly so - you guessed it - we switched it for a blue one. We let the city take away the one with the blue front and kept the other. Although it wasn't the most reliable vehicle, I loved that crazy truck.

But like many families from the central valley, we had moved here from the bay area and were a family of commuters. My father worked in San Francisco every night and all my doctors were still in the San Jose area. Finally my parents decided to buy a real car.

My mother is a simple woman who doesn't ask for much. When she and my father discussed what to purchase she had only two stipulations - she wanted it to be a four-door vehicle and to have heating and air conditioning. She didn't care about brand or anything else. My father left for work one night, and the plan was for him to purchase a car the next day. That night while he was working my mother woke up suddenly with what she considered a horrible realization - she had forgotten to tell him not to buy a red car. To her driving a red car past a police officer was like waving a red flag in front of a bull - you're just asking to get hit with a charge. Now keep in mind that cell phones were not as affordable at this time, we certainly didn’t own one - she could not text him with "NO RED PLEASE". There was nothing she could do but wait. Dad pulled up the next day in a red Chevy Cavalier. My mom just laughed.

Shortly after, my mother and I made a trip to Stanford for a second opinion about the spinal reconstruction recommended by Dr. Fountain. This was a drive my mother was more than familiar with, having driven me there regularly as a baby. Our trip was interrupted by an approaching siren. My mother had failed to see a speed limit sign that was slightly covered by trees and “the red car curse” was resulting in her very first ticket. She was embarrassed, took the ticket, and we continued on our way.

(*note: I called my mother a few minutes ago to confirm that it was Stanford that we had gone to for the second opinion. She insisted that we also went to UC San Francisco, but since I have no recollection of this visit we are going to skip it for now)

This visit was dramatically different from the one with Dr. Fountain. Dr. Fountain’s office was small and intimate. His wife was the secretary. There were stacks of highlights magazines to keep me entertained. The other staff, the smells – everything felt familiar and safe. Stanford didn’t feel anything like this. My mother and I waited in a white sterile room. Before meeting with the doctor we met with another gentleman who asked a bunch of questions. He had me stand up and placed his hand around my upper neck, and pulled up my chin. He was polite – but who the heck was he?

The “real” doctor came in next. He was all smiles and began to rattle off a lot of numbers, “I’ve worked with this many people like you, performed this many surgeries, have this many diplomas.” Whatever. I remember thinking “that’s nice, but you’ve never met ME.” After a few minutes he had us schedule an appointment for an MRI. When my mother called to speak to the doctor about the results, she was “greeted” by a snooty secretary who said they were not in yet, but when they were the doctor “might send her a note.”

My mother could not believe the coldness, and the lack of urgency. Every other doctor’s actions were conveying that this was an urgent matter. My spine was putting dangerous pressure on my lungs. The chest pains that I was feeling when I breathed in were increasing. I sat in the school office during P.E. because I had turned blue in front of my teacher. And this doctor “might send her a note”?

A few days later Dr. Fountain personally called my parents. He asked how they were feeling and what they had decided. There were no more questions in my parent’s minds as to who should perform the surgery – only one doctor had treated me like an individual, not a number. We asked Dr. Fountain to perform the surgery. He accepted, and then made a referral to a pediatric pulmonologist named Dr. Fox.

Together these two men would try and save my life.

(to be continued)

Sunday, January 25, 2009

Infinite Chances

(continued from "The Observation that Changed Everything")

“Life gives you infinite chances”: A phrase from one of my favorite shows (mentioned several blogs ago) and something I have come to believe whole-heartedly. Life has a tendency to come full circle; at least that is what I have experienced on a number of occasions.

During a bi-annual visit to my Great Aunt and Uncle’s house my parents were alerted to significant changes in my condition (V.A.T.E.R. syndrome, specifically the scoliosis aspect) that had not been evident to them. However, these changes were very obvious to family members who hadn’t seen me in several months.

Oblivious to the weight of their concerns, we returned home and I returned to life as usual – but not for long. My mother scheduled an appointment with my back doctor and we went to see her. My parents could not understand how this had slipped by my multiple doctors. My doctor also seemed concerned, and I must apologize, but a lot of these memories are blurry to me because:
1. It was an information overload for a 10-11 year old child
2. These medical memories are intertwined with memories of playing with friends, “crushing” on boys, doing homework, moving twice, and other normal stuff

I do not know why, but although this woman was my regular back doctor, we were referred to a specialist for council. The first doctor we would consult was named Dr. Fountain. Dr. Fountain had performed spinal surgery on me when I was two years old. At that time he removed a piece of my tailbone and placed it against my spine, holding the spine upright. I had several body braces and body casts during the first few years of my life. So when my parents told me about Dr. Fountain and our visit, I think we all assumed it was time for another brace to straighten me out.

I remember how sure I felt that I was going to be getting another brace. I was a little resistant – puberty would be hard enough without feeling like a turtle (*singing “Hero’s in a half-shell – turtle power!) – But not overly so. We sat down in the office – my mother, father and me. My father being there should’ve been my first hint that this wasn’t going to be a good visit. My dad worked night-shift and rarely accompanied us to things like doctor appointments. After reviewing my x-rays, Dr. Fountain gave us the surprising news. My spine had started rotating around the bony barrier he had created when I was two, and no body brace could reverse its effect. I would need to have another surgery.

I was in shock. My mom started crying. I don’t remember actually feeling anything until she started crying. I was like a baby who falls over and bumps its head, then looks up to its mother’s face for directions as to how to react. She was scared, so I felt scared. She was crying, so I started crying. We were escorted into another room while my father spoke to Dr. Fountain alone. “Man-to-man” I guess.

My parents trusted Dr. Fountain. They loved him, especially how quickly he and I bonded when I was a toddler. But it was a big decision, and my parents still wanted a second opinion. Our next visit would be somewhere that was very familiar to them…

(to be continued)

Thursday, January 22, 2009

The Observation that Changed Everything

(continued from "Warning Signs")

There is an interesting phenomenon that takes place in life. Often people who see you every day are too close to notice small, incremental changes in you. This happens a lot with people who are losing weight. Their closest family members do not always notice the loss, except maybe once there are other physical signs like pants falling off or shirts appearing baggy. But to people who only see you from time to time the change can be more apparent. This was the case with my Great Aunt Ruth and Uncle Dick, who we visited only twice per year.

During the summer of ’92 or ’93 – I can’t quite remember which – we were up visiting them in Weaverville, CA. No one celebrates the 4th of July like they do in Weaverville! Pancake breakfast that the whole town attends, an anvil firing (you’d just have to see it), small-town parade w/ ice cream social, fairgrounds with only a few games (my favorite being the dime toss!), fireman’s muster and more. We arrived, ready to celebrate. Somewhere during the week of festivities my Great Aunt and Uncle would ask my parents,

“What’s going on with Alicia?”

At the time I had so many doctors. I had a lung doctor who had diagnosed me with asthma, a doctor for my allergies, a foot doctor for my club foot and other physical therapy needs, a heart doctor for my heart murmur, and a back doctor for my scoliosis. My doctors were all in the bay area, so my mother would schedule multiple visits on one day to avoid frequent commuting and to ensure that I didn’t miss too many days of school. But all of these doctors in all of the visits failed to notice a very obvious and dramatic change in my body. During my last growth spurt (and I use that term loosely, because I still stand at only 4ft2in) my spine had twisted to a life-threatening 85 degrees.

My family’s simple observation would set in motion some of the most influential events of my life. Of course I had been feeling my body’s changes for some time. At this point I would feel a sharp pain every time I took in a breath. I could no longer ride my bike without feeling extremely winded. I limited my running. But this, like the chest pains mentioned in my last blog, had become normal to me.

I was too busy being a kid to worry about random aches and pains.

(to be continued)

Wednesday, January 21, 2009

Warning Signs

One afternoon when I was in the fourth grade I was playing at recess when our first bell rang. I had been playing alone, and was on the other side of the blacktop from my classroom. I started running toward my classroom, knowing I probably wouldn't make it before the second bell rang, meaning it'd be tardy.

As I was running and worrying about what my teacher would say, I got what I can only describe as a feeling that part of my lung had somehow gotten stuck inbetween two of my ribs. It was a sharp, deep pinching feeling, that I had started getting quite frequently. I did the only thing that I knew would make it go away. I stopped, kneeled over a bit, squeezed where the pain was coming from, and screamed as loud as I could.

The squeezing tightened and tightened until it was almost unbareable and then POP. It was gone. I don't know why I didn't tell anyone what I had been experiencing. It had become somewhat normal to me, I'd forget about the sensation as soon as it passed. I would later find out that my body was trying to tell me something very important. But what did I care?

I just didn't want to be late to class.

(to be continued)

It Shouldn't Be Like This

Recently some of the women of my church started a new Bible study by Beth Moore about the book of Esther. We discuss what we read during the week and then watch a video segment of Beth speaking. Last Monday, Beth shared briefly about the great depression, specifically the effect that the stock market crash had on her grandmother. She describes her grandmother’s feeling of loss and anger and (what really stuck out to me) overall mind-set of, “It shouldn’t be like this."

You can’t help but hear people talking about our current economic situation – unemployment rates, foreclosures, etc – so many, even within our own community, are hurting in these ways. Beth explains that loss can leave us with a feeling of entitlement, which again leads to that mindset of ,“It shouldn’t be like this." Last September my husband and I had four jobs between us and had just purchased our first home. A couple weeks later I became sick with pneumonia resulting in a two-month hospital stay. I have since been laid off from both of my jobs due to the economy. My husband had to change from two jobs with unpredictable hours to one with set hours in order to support our family. Do not misunderstand – we are still in a much better situation than many others, and MUST remember to be thankful. However, I still struggle with our significant (and what seems so sudden) change in financial stability; the metaphorical rug that was pulled out from underneath our fragile expectations. And as the bills come in and I sort through questions about my ability to return to work and decisions about government assistance and hope that my husband will return to school and so on... I sometimes look at my life and say “It shouldn’t be like this.” “We were being so careful.” “We were working so hard.” “We had so many plans.”

I am not alone in these feelings, but I try not to entertain them for too long. Maybe it shouldn’t be like this, but it is. Obviously I never had ownership of my destiny; so if “It shouldn’t be like this” then God, show me how it should be! I will hope in the future that God has in store for us. He has promised that he will give me all I need, and the truth is I am finding more and more that I do not need very much. The Bible calls us to mourn with those who mourn – and people are definitely experiencing loss. So comfort each other. But we can also re-examine our expectations and compare them with God’s promises (which I am disappointed do not necessarily include the LCD screen TV I was admiring over the weekend). This is a scary time, but it can also be an exciting time. It is how it is – so now what? Thanks to God that we have a community where we can live out the answer to that question together and do not have to be alone.

Tuesday, January 13, 2009

Your Story Will Heal You

I used to watch a show every day called “Starting Over”. There were two “Life Coaches” on the show, one named Iyanla. One thing she would tell every woman she worked one-on-one with was, “Your story will heal you.” She often had the ladies write down their life story and read it aloud to her. As they read, she would challenge their versions of history, pointing out misconceptions, assumptions, and point out road blocks to growth. Through this process I would see great change in their attitudes and overall beings. Particularly when we are children we have such a skewed perception of reality – I think it can help anyone to re-evaluate the circumstances of their lives and most people I believe would walk away with a new understanding of at least one event or person, etc.

Already as I talk to family members about writing this book about my life, they are offering new information that is changing how I feel about them as people. I would even say that they are becoming “people” more and more to me, and not just “my mom” or “my dad” or “my aunt” or “my uncle”.

I look forward to reconnecting with family members, and I’m excited that this project is encouraging exactly that.

Thursday, January 8, 2009

Do I Really Want to be a Writer?

If I really want to be a writer, I need to take the advice I'm always forcing on my also want-to-be writer husband - I need to dedicate a few hours every day to sitting down and writing, whether I feel like it or not.

Since my last blog I've worked a lot on my new goal of writing a book by doing anything but writing. I've been reading a book about writing sermons, looking through old albums of me growing up with various braces and doctor visits, and even dug up a couple videos of the three months I spent in the hospital in the 6th grade. Now I'm begging my family for a scanner with an automatic feeder for my birthday (it's coming soon!) and planning to convert my videos to data DVD so that I can upload them on this site.

Looking through those pictures and videos brings back all kinds of memories, and I think they will be important tools for helping me to tell my story. Maybe that's the photograper in me speaking.

Anyone who knows me for more than five minutes eventually hears a story or 100 about the three months that I spent in the hospital when I was in the 6th grade, and the events surrounding that experience. It was obviously a life-altering time, because so many of my random thoughts and fears take me back to it. And as a result I will talk about my time there for as long as anyone will listen. It’s funny that, as much as I bring these stories up, I don’t remember writing much about them. Maybe an entry or two in one of my journals – but nothing to represent the substantial effect this time had on me. I'm much more likely to share photographs and my videos with someone. It's faster and easier and never requires me to tap deep into my real feelings.

So with my recent hospital stay, two months spanning from last October until December, how could these old memories be far from my current thoughts? There are so many parallels and so many differences that have bubbled up to the surface and screamed in my face "DEAL WITH ME NOW". Even my second to last day I was forced to deal with these feelings when it became time for my nurse to pull out my PICC line. I had made the mistake a couple days prior of asking "How long is the PICC line, anyway?" The nurse formed the length with her hands, spanning over a foot. A PICC line, in case you don't know, goes from the entry point (which was near my elbow) all the way to your heart, so that the staff can draw blood directly without poking the patient with a needle every time. Mine was inserted while I was unconscious, and as I started to panic about its removal (and proceeded to panic for two days) I was assured time and time again that it wasn't going to hurt. The tube was "floating in my vein" - a comment that did not help reassure me AT ALL. I had become okay with regular blood draws and even stopped putting up a fight about taking blood gases (when they draw blood directly from your artery; my last several draws required 3 to 5 deep attemps). But this PICC line was unfamiliar territory, and sounded insane.

Any conversations about the matter transformed me instantly into that terrified 12 year old girl, who was never warned that 4 to 6 weeks in the hospital could and would turn into three months of blood draws, learning how to walk again, body braces, leg braces, neck braces, an iron lung, a collapsed lung, a tracheotomy, a G-tube and many more rapid changes. They seemed like bullets, zooming past my head as I attempted to duck and dodge, but hit every time.

So here I was, 25 years old but frightened to a point that confused and frustrated my nurse who fully understood the reality of the situation – pulling out this “floating” line was not going to hurt. But all I could think, as I cowered into my chair, was “How could it not hurt?” and “Where is my mommy or Adam? Couldn’t they wait until someone was here to hold my hand?”

Finally I handed over my arm, and clutched onto my loyal companion, Lambert (a stuffed lamb I have had since I was three). She had been right; the only part that hurt was removing all the tape and cleaning where the stitches had held the line in place. It was out before I knew it – and I was 25 again.

I apologized for my behavior, and explained to her that when she was talking to me she was talking to a 12 year old, not the rational 25 year old she expected. She misunderstood me and told another one of my nurses that I told her she had talked down to me. I tried to clear that up later, but I don’t think she understood or believed me. But I guess irrational fears don’t translate well to those who haven’t had similar life experiences.

I often have to fight to be a grown up. It’s so easy to revert in fear and allow others to take control. One of my hospital chaplains, Roger, said that it’s natural when you’re going through a challenging time to suddenly be dealing with feelings from years past. I grew up a lot during this last hospital stay, but obviously I have a lot more to go. Thankfully, God and others are patient with me and nudge me along, so there is hope for me yet.

Thank you for reading.

Question: How do you deal with fear?

Friday, January 2, 2009

Hope That is Unseen

" 22We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. 23Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption as sons, the redemption of our bodies. 24For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? 25But if we hope for what we do not yet have, we wait for it patiently.

26In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. 27And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will."

Hope That is Unseen

The scriptures above are from Romans 8, a chapter that Pastor Jerry Yates shared with me while I was in the hospital. It became one of my favorite chapters of the Bible - I read it to anyone who is willing to listen. Even though I know the book of Romans is a letter, I still picture Paul speaking the words as though he is reciting one of Shakespeare's Soliloquies. The verses that stood out to me the most were 24 and 25. I felt very convicted because I was worrying constantly, not trusting that God was working in my favor while I was sitting in my hospital bed. So I put those verses up on the board in my room and everytime I felt anxiety I'd look them over and they would bring me some comfort. I'm not going to lie and say I felt instantly at ease, but I did pray that I would have faith in what I could not see, and have trust in God.

Since I have returned home from the hospital I have seen many ways that God had been working in my favor. First, while at a Christmas dinner with my friends Karissa and James and family, James' Mother informed me that after reading the article published about me in the Stockton Record she had become so outraged that she wrote my insurance company an angry letter and also wrote St. Joseph's a letter thanking them for the way they were assisting me with returning home. She told several other people to do the same.

I spent the last couple of days sorting through boxes and boxes of paperwork. I was amazed at all of the cards that people sent me - especially the cards from extended family members or even friends of friends that I don't know too well. I feel so blessed that people took the time to write down some thoughts and send them my way - prayers and best wishes from around the country. It reminded me of another extended hospital stay in which people from all around sent me letters and cards. These last few days have been sort of painful, it's a weird feeling to open these cards. But it's a good hurt. I don't really know how to explain it. But thank you everyone.

Today I was walking into Target to buy some storage for all the paperwork I mentioned above. My mom dropped me off at the front and then went to park the care. As I entered a stranger said "Hey, you got out of the hospital". The young woman explained that her Aunt had been in the hospital recently, and she remembered seeing me. She appeared so pleased to see me out and about - I felt a little celebrity status! lol. I asked how her Aunt was - she had been moved to a care home but is doing better. We wished each other well and went about our shopping.

My Aunt Maxine from Idaho, who I rarely speak to, called me yesterday. She, also, was very pleased that I am home, and she wanted to share something with me. Apparently she had been regularly updating a co-worker about my situation, and had shared my article with her. My Aunt wanted me to know this woman was excited that I was home and had been diligently praying for me and also thought of me as an extraordinary person. I didn't know how to take the information, it was very moving, and compliments are always hard. So I just told her to tell her co-worker "thank you" and joked about the fact that I am writing a book.

These are only a few ways I have seen that God was working in my favor. It is very humbling, because I was far from the brave Christian while in the hospital - and definitely not my first few days home. But I did feel strengthened from those scriptures, and I hope you find something from them as well.

I think in the beginning of my book, where people sometimes put quotes, I will put the chorus to a song I hope to someday sing faithfully.

"Jesus, Jesus, how I trust Him
How I've proved Him O'er and O'er
Jesus, Jesus, precious Jesus
Oh, for grace to trust Him more."

Goodnight, and thanks for reading. God Bless.

Thursday, January 1, 2009