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Sunday, June 28, 2009

My journey to the asthma hospital

On January 8, 1985, I boarded a plane in snowy Grand Rapids, Michigan with my mom, and three hours later we arrived in an equally white Denver, Colorado. This was not a vacation. The purpose of the trip was for mom to have me admitted to a hospital that specialized in asthma. The estimated time of stay was 6-8 weeks.

While my first ride in an airplane went great, that night at the hotel the asthma beast that I was oh too familiar with struck again.

"Do you think I should take you across the street," she said as we both stood looking out the window at the unfamiliar complex of the asthma hospital.

"I don't know," I said, taking a hit of my inhaler, pretending to be fine. "I think we can wait."
The truth was I was very short-of-breath that night. When mom fell asleep I sat up on the edge of my bed gasping for air. "I should wake her up," I thought. Instead I took more hits of my inhaler.

The next morning mom and I walked to a nearby restaurant. I concentrated on every minute, thinking each was my last of normal life. When finished we walked back to the room. Mom said, said, "They say you'll only need to be here 6-8 weeks. It's only a short time. Just think of every weekend as a marker of one more week gone by."

I suppose it was mom’s optimism that kept my anxiety under wraps. I was excited about meeting other asthmatics my age, but I was nervous about the unexpected.

Back in the hotel room mom grabbed one end of the trunk. I sighed, and grabbed my end, and we were off. While walking across the street I looked up at the buildings wondering which one would be my new home, and what floor?

Mom was sitting in the business office filling out paperwork while I sat twiddling my thumbs on a chair in the hall. A few days ago, he called and introduced himself to me, “I will be your counselor during your stay at the asthma hospital. If you have any problems at any time I will be available.”

He appeared to be of amiable disposition, and his voice was very calm. I looked forward to meeting him. For now, though, I had to wait for mom to finish filling out papers, and “It’s taking forever,” I thought as I peered down the hall where there were several offices.

I leaned forward and thought about going into the office where mom was, but mom told me specifically to stay put. I could hear the muffled sound of mom’s voice followed by the muffled sound of the secretaries, followed by shuffling of paper, and then, for what seemed like eternity, the click clack of a typewriter.

What would he look like – the social worker? Would he be as nice as he sounded on the phone? I sure hoped so, because I couldn’t handle a mean person. What would the nurses be like? What would my doctors be like? And, perhaps most important, what would it be like to meat a bunch of other asthmatics who were just like me? Would they be just like me? Who would become my friend? Will I find a friend?

These thoughts rolled around in my cranium like balls on a billiards table until finally the click clacking stopped. I stood up and peered into the crack of the door and saw the tip of mom’s jeans where they covered the knees and the front of a desk with paper scattered about. Why was she still sitting there? How much paper work could there be?

The door opened and there stood mom in her blue top and blue jeans. Her dark hair set in a new perm over her beautiful phlegmatic eyes. She was a young person, only 38, but to me she was a sagacious god, a permanent barrier to any harm and the answer to all the problems of the world. I know this wasn’t the normal mom/son relationship of your typical teenager, but I wasn’t
normal by any means – I was chronically ill. Funny thing was, though, I didn’t think of myself that way. In fact, I didn’t think of myself as chronically ill until 23 years later when I’d send for, receive, and read my medical records from my stay at the asthma hospital.

“He should be here any minute now,” she said, her voice soothing.

“Who?” I said, shaking my head.

“Ric Dexter. She called him. She said he’s a tall man with a well kempt dark beard, and is really nice. She said you’d like him.”

“Yeah, I know,” I said.

It seemed like forever, but from around the corner appeared a man who fit the description. "
Hi, I’m Ric Dexter,” he said. “I talked with you on the phone.”

I looked at mom. She said, “Hi. I’m Alice Frea and this is my son, Ric.”

“Hi, Rick, I hope you are as excited as I hope you are,” he said. “Let’s get rid of this trunk, and then I’ll take you on a tour. Then I’ll show you your new room and introduce you to your new room mate.”

Lamely, all I could think to say was: “Okay.”

He grabbed one handle of the trunk while mom and I looked on. “Normally I’d say your son should grab that other handle,” he said, “But he doesn’t look so well right now.”

I took a deep breath as I watched mom grab the handle and HEAVE the trunk. I lagged behind Ric and mom. We were walking down the hall, through a door I suspected would take us back out into the cool winter air that was Denver, Colorado. But the door took us to a hallway that wended this way and that, through this door and that door, until finally we were in some sort of lobby that smelled of cooked bacon.

“This is the lobby of the Goodman building,” he said. He pointed left at a set of see through doors where I could see what appeared to be a restaurant with a few people seated at many tables eating what I suspected was bacon and eggs and toast and whatever came on the early morning menu. “That’s the cafeteria,” he said. He peered down at me. “You won’t be eating here, Ric.” He looked up at mom. “But you will become really familiar with the food here, which is pretty decent for a hospital.”

“I never had good hospital food before,” I wanted to say, but held my tongue.

“Around this corner,” Ric said, “ ah here it is, is the elevator that will take us to the 7th floor where you will be staying.”

He pushed the little round, red button. Ric continued to explain about the hospital to mom and me, and mom occasionally responded with an “uhum,” or “okay, I see.” I stood by the elevator door listening to the thump-thump of my heart in my chest. I wondered if mom and Ric could here it

“This is 7-Goodman,” he said as the door swung open revealing a long hall with bright orange carpet. “This is where my office is,” he said as we passed a window revealing offices set apart by dividers. He opened the door.

“Hi, Sarah,” he said. “This is Ric Frea and his mother Alice.” Sarah was a heavyset lady with dark, curly hair. She smiled pleasantly and offered a hand, which I took. “You will see her several times a week as many of your appointments will be with me and Linda.”

“Who’s Linda?” I asked. “She’s one of your doctors. Her office is right next to mine.” He pointed to an office that had “Ric Dexter” printed on the door. Then he pointed to a door that had “Linda
Hepper” printed on it.

“Okay,” he said, “I can show you around here later. I suppose you want to meet some kids. Right” He patted me on the shoulder and he walked to the door and opened it. “Come on. It’s time to have some fun.”

I felt a lump in my throat as I stepped back into the hallway and waited for mom and Ric to take the lead. I then followed Ric down the hall to a capacious room with the same bright orange carpet that filled the hall. To my right was a large nurses station. Two nurses were sitting there with their heads stuffed into charts.

The majority of the room was filled with square, white tables with chairs pushed neatly in place. Straight ahead I saw a pool table. The long wall to my right was replete with several doors and windows blocked by curtains on the other side. The same scene was on the opposite, Western wall.

A bulletin board on the Western wall had a head of Beetle Baily and Garfield with the words, “WELCOME TO 7-GOODMAN” neatly printed between them. Under that was written, “My way of drawing Garfield. I call him Crashfield.”

While I was busy looking around the room, I didn’t notice the nurses had noticed us and had were now standing beside us. Mom and Ric set down the trunk.

"This is Karen," Ric said, introducing me to the first nurse. She was a young, fine looking curly haired nurse. She bent down before me so I could see right into her pretty blue eyes. She said, "You're blue!

"We better consider this a code blue," said a short, pudgy nurse in a white dress who stood behind Karen. Her nametag read Linda.

Karen grabbed my hand, and nearly dragged me across the room. "Have a seat," she said motioning to a chair by the wesst side of the lobby (which I later would learn was the girl's side)You need a treatment NOW."

Mom followed close behind. She kept her distance as Karen took my vitals while Linda disappeared somewhere behind the nurses station. I groaned as the pressure from the sphygmomemometer exceeded my pain threshold on my right forearm.

“Sorry,” Karen said, “We like to start out high when we have new patients.”

While I listened to the air leave the sphygmomanometer, I looked over Karen’s rich head of hair at mom and Ric. Ric stood there with a cool expression on his face, as though he had been through this many times. Mom looked worried.

My mom recounted her anxieties in a recent email:

"Here we were at the leading asthma institution in the world and they were running a code blue on you. If they were taking it that seriously, it meant you really were THAT bad."

“Ric wanted to take me on a tour,” I said to the nurses, vaguely hoping it might get me out of this predicament.

“Ric understands that we need to do our jobs,” Linda said. She stood beside me now holding a nebulizer. She plugged it into the compressor that sat on a table. “Right Ric?”

She clicked the nebulizer on so it hummed audibly. Over the hum I could barely hear Ric. “I certainly do. Hey, I’m going to go back to my office while you finish up here. When you are done you can call me and I’ll finish the tour. I’ll put the trunk in Ric's room.”

“Great,” mom said. “Thank for—“

The rest of that conversation was lost as Linda blocked my view of mom and Ric, turned on the compressor, and the nebulizer rumbled to life. She then handed me the misting nebulizer.

"I feel fine," I said.

"You're just used to it," Karen said.

"I feel fine," I thought, forcibly preventing myself from rolling my eyes.

I put the misting mouthpiece into my mouth the way I did many times before in hospitals.

"Sit straight," Karen said, "Your stomach should go out when you breathe in slowly through your mouth, inhaling the white mist. Exhale slowly through your nose."

"I know all that," I said.

"We're going to re-teach you many things," Linda said.

"Plug your nose when you inhale," Karen said, "When you inhale count to three, when you exhale count to six... sit up straight... Ric, sit up straight."

Lots of rules for one silly treatment, I thought. But these were the rules I had to follow for the next 6-8 weeks. I sure so hope I'm out of here in 6-8 weeks.

Finally the treatment was done. "Shake it good," Karen said. "You want to get the most medicine you can out of it."

Several minutes later the comperssor was off and I watched as a petite, dark haired lady in a brown dress walked up to mom. "I'm Dr. Betty," she said, "I'll be your son's doctor. We'll take good care of him."

"That's what we're hoping," mom said, and she told Betty about the asthma attack I had last night

"By the looks of things here," Dr. Betty said, "You should have brought him in. In fact, he should have been in a hospital the past week. She looked mom in the eyes, "Really, HE IS THAT BAD. I just want you to know you did the right thing bringing him here."

Finally, after an hour with the doctor, the smell of spaghetti was in the air and a congregation of asthmatic kids of all sizes shuffled in one by one for lunch and noon meds.

I barely had a chance to meet the other kids when Karen called me to the nurse’s station where Ric was standing. “Well,” he said, “I don’t see your room mate, but how about if we finish our tour now that you’re feeling better?”

He took me to a door on the east side of the room. “This is the boy’s rooms,” he said.

"This place is clean for a boy's dorm," mom said as she entered the room and looked around. I followed closely behind.

"Well," Ric said, "We have a level system here. If the kids follow the rules they can move up to honors and get special privileges. It's a good incentive to keep your room clean." He smiled and looked at me.

On the far side of the room, the eastern side, the wall was basically a huge window with a view of the city around the hospital set amid overcast skies. "If you look north," he pointed, "you can see the Rockies on a clear day."

I followed him to the next room where the bed by the window was unkempt, and books and papers scattered about. "Eric is your room mate. He's a good kid, but he's kind of sloppy."

There were two other beds in the room. "The one by the door is yours," he said. "You have to be close to the nurses until you move up to the next level. If you get to honors you can pick your own bed and even have a chance to get a TV."

After showing me around the boy’s rooms Ric showed mom and I around the rest of the hospital. By the time we were back on 7-Goodman the other kids slowly carted into the room. A plump black kid, who would later introduce himself as Willie, was playing pool with another boy with messy black hair.

“Hey, there’s your room mate,” Ric said. I looked around the room at all the kids that were now scattered about, two boys were sitting at tables involved in a project that was perhaps homework, a conglomeration of girls were standing in the far corner perhaps chattering about the latest gossip, and perhaps the topic of the day was, “Who is the new boy? Gosh, will he turn out to be a cool kid or a chump?”

Ric led mom and me to the pool table to where the messy haired kid was aiming his cue at the black ball. Click. “Aha, I won!” he yelled as the black eight ball bounded into a corner pocket. “Finally I beat you.”

“Ah, that’s fine,” Willie said, “We’re just having fun.”

“Fun, my butt. It’s all about winning.” The messy haired boy’s grin filled his face as he twirled his pool stick over his head.

“Hey, Eric, how’s it going,” Ric said. The pool stick flew out of Eric’s hand and clattered on the floor.

“What? Who?” His smile instantly wiped away and filled with an expression of concern.
“I want you to meat someone.” Ric motioned for me to move forward. “This is Ric Frea

"This is your new roommate. Rick, this is Eric Groch.”

I offered my hand, but Eric walked away. He bent down, picked up his pool stick, and leaned on the table, facing the door to his –and my—room.

Beside me mom was standing with her camera out. She tried to take a picture of Eric, but he quickly darted out of the range of the camera. Mom aimed through the camera again, but he darted, ducked under the pool table. The camera clicked. The picture of the pool stick and parts of Eric’s red shirt still show in the picture today, the only one of him I have.

Only fitting, though, as he would turn out to be a big thorn in my side – a drug addict, criminal mind moron you might say. The kind of person no mom would ever want her son to meat, and here I was his roommate.

Willie said, "Well, if you're not going to play pool, Rick can play."

"Cool," I said, "I'll play."

Eric plopped himself out from under the table, but when he saw my mom was eagerly standing by waiting to snap another picture, back under he went. An ominous sign of the chump Eric would turn out to be.

Willie would turn out to be a good pal.

(Dean and his mom and dad were standing nearby. Mom talked with his mother. Introduced me to Dean, who was admitted the day before. The next day mom and Dean’s parents went shopping while I participated in an array of tests.)

Later that day, after a ton of appointments with doctors and testing, mom asked my doctor if she could take me to the museum. Dr. Betty said I was too unstable. I understood, but it was disappointing none-the-less considering mom was in town five days and I couldn't do anything with her.

Finally, on the 14th of January, I kissed her good-bye. I really didn’t have a lot of time those initial days to be homesick as the activities were abounding. Still there were some dark moments.

This was not a normal hospital where you sat in bed all day. It was more of an institution where you went about your normal daily activities, which were blended in with various tests and appointments. The intent was to get our asthma under control in the process of making us gallant asthmatics.

The next morning I got up at 6 a.m. and walked out to the lobby in my jimmies. A short, curly haired blonde female teenager I had yet to be introduced to was taking a breathing treatment. I could hear the soft audible purr of the machine.

“I can see your underwear,” Eric teased. “Hey everybody, you can see Rick's underwear through his witto jimmies.”

Of course growing up with four brothers I didn’t care, and proceeded to the nurse’s station. The night nurse placed three pills on the counter. “this one here tastes really bad, so you might want to take it with grape juice,” she said.

The grape juice was good, but that pill tasted NASTY at the back of my throat regardless. It was the steroid pill. Even through the strong grape flavor there was nothing I could do to prevent the pill from sliding over the sour receptors of my tongue.

The other pill was Theo-Dur, a bronchodilator in pill form. That pill was relatively bulky, but I had no trouble getting it down.

“Can I take my treatment now?” I asked. I was tight.

“Well, you are gonna have to wait a while. Deana is taking a treatment now, and then comes Eric, Dean, Willie and then Stan. They were up before you. If you want to take a treatment first, you’re going to have to get up a lot earlier than this.”

“Oh, come on. I need one now.”

“Well, you should think about that before you sleep in,” she said, as she set the next kid’s meds on the counter.

“But I didn’t’ sleep in. I’m up right on time.”

“Well, you’ll have to reconsider.”

I sat in a chair by the door of my room while I waited for my turn on the nebulizer. Finally Stan sat in the treatment chair. Another girl was in the other treatment chair. I walked to the med room behind the nurse’s station. Here, on a counter, were several brown, glass bottles of medicine.

I filed through cardboard papers in a box to the right and pulled out the one with my name on it. Listed on the card was the meds I was supposed to take in the nebulizer: Alupent 0.3cc and Atrovent 0.5mg. As I was reading the card Cathy, my head nurse, came into the room and poked her head over my shoulder. Willie was also in the room doing something with his nebulizer, but I paid him no attention.

“I’ll just watch you do it today,” she said. Before this day she drew up the meds and I watched. So this was progress.

To the left, on a rack hanging on the wall, were plastic bags with our nebs in them. I grabbed the one with my name, heart thumping but only because I had cute Cathy breathing down my shoulder, and dumped out the contents on the counter. I set it up so the cup was open.

I grabbed the syringe and set it in front of me. I reached for the large, brown bottle of Atrovent and twisted the cap until it was off. On the inside of the cap was a black squeeze bulb. I squeezed up the correct dose as Karen showed me the earlier, and squeezed it into the nebulizer cup. I did the same with the Alupent.

The treatment now together, I walked back to the lobby. Cathy followed me out of the med room, but instead of following me to the treatment chair she went behind the nurses station. My chest was tight. I was audibly wheezing. I was huffing as I walked by the nurse’s station. Stan still had his hand over his nostrils and the neb in his mouth, but I could hear it was close to finished.

“John, can I talk with you,” Cathy said.

I approached her. As I did so Stan got up and another kid took his place in the treatment chair. I had missed my turn. Thank you very much, Cathy. How the heck could I miss my turn when no one came into the med room the whole time I was in there.

On a table near the nebulizer three girls were seated and giggling. Al three were looking at me. One of them got up, giggling the whole way, and walked to the med room.

“John,” Cathy was leaning on the counter looking at me. She whispered as I stood next to and leaned on the counter. I could not hear what she said, so I leaned in the same time she did. We were nearly face-to-face. “I didn’t want to say this in the med room in front of Willie.” She paused and held back a smile before she finished. “First of all, you really ought to wear a bathrobe over your pajamas. Either that or you should get dressed before you come out here for your meds in the morning. We can all see your underwear through your pajamas.”

“You already said that,” I said.

“Well, I guess you didn’t hear me. Do you hear me?”

“Yes,” I said. “I hear you. Tomorrow I’ll get up earlier. What time is good?”

“Well, if you want to get up before the other kids, you better be here by 5:30. You don’t have to, it’s your choice. Remember, you can take your morning treatment anytime between 5:30 and 6:30. But if you need a treatment as bad as you do, you ought to be up earlier.”

“Okay,” I said. From now on the other kids are gonna wait for me.

I turned and started for the nebulizer. Stan was STILL puffing on that thing. Is there anything coming out? I don’t see any mist. I turned to Cathy who was still leaning on the counter looking at me. “Cathy?”

“Yes.” She let her smile show this time. You look darn good-looking for a nurse. I wonder how old you are.

“How did Stan beat me to the treatment chair. I didn’t see him in the med room.”

“He was up earlier and prepared his treatment so he was ready to go. You can do that to if you want.”

The next day my alarm went off at 5 a.m. sharp. I leaned across my bed, hit the off button, and could hear my room mate snoring, his radio still blaring. I hopped out of bed in my pajamas, and I grabbed my green fluffy bathrobe I had set on my nightstand. As I opened the door to the lobby I saw there were no kids up yet. I had all the med room and the nebulizers to myself.

When 5:30 arrived I had my butt in the nebulizer seat. From this point on the other kids had to wait for me.
It was my responsibility to know when my meds were due and to take them as instructed. If I missed one dose, or used improper technique, I would lose my allowance for the week. Without allowance I’d have no money to spend at the weekly field trip. (Which didn't matter at this point anyway because Dr. Betty wouldn’t allow me to go even if I had the points.)

The point sheet is what I used to keep track of my progress. On it was all the things I had accomplished in a day. If I lost it, that was like losing all my points. And it is points that determined how I moved up the levels.

As I popped my pills with grape juice, I looked up at the board behind the nurse’s station. Dean’s name and mine were printed on the bottom written in blue marker, while all the other kid’s names were written in black. Next to our names was written the level we were on. My level was 2. Alongside the other names were 1, 2, 3, 4 or H for honors. The goal was to move up to honors, and the place no one wanted to go was level 1, because that meant no allowance and no privileges at all.
I followed Eric and the other kids to the elevator and down to the basement. It was time for my first day of school. I followed the other kids through the tunnels.

Mr. Rose was a nice teacher. He seemed a bit obnoxious though, but I suppose when your teaching a bunch of chronically ill kids you have to be a bit different. "We have a new student, today," he said, "This is Rick Frea. Rick, tell us about yourself."

"Um..." I said, "I'm from Michigan and I... uh... I have asthma and it got really bad and so now.. uh.. now I am here to get my asthma under control."

"As is the case with all of us, right guys?"

The class shouted in unison, "Right Mr. Rose."

A short-stout kid with loose fitting clothes and long blonde hair sat in a seat right before Mr. Rose's desk. He never stopped talking for the first 30 minutes of class. Finally Mr. Rose said, "Chico, I think that bandana of yours is tied too tight over your skull and squeezing your brain, because it sure doesn't seem to be working today."

"That's because I'm hip." Chico said.

"That's because you're a dip," Mr. Rose said. "Now stop talking a minute so we can educate the rest of the class, because obviously you don't have any interest in education. I'm not even sure it's possible to educate you."

"I'm already fully educated," he chided.

"We can all see how educated you are, Chicohead. Now hush."

At noon I followed the other students back through the tunnels to 7-Goodman. The nurses gave me my noon meds. Karen was there. She told me I had appointments the rest of the day and wouldn't be going back to school.

The second day of school, and many of the days that followed, I had to leave many times for "lots of appointments, which included a PFT," according to my personal diary.

By the time I got back from testing the other kids were done with school. I was told after school was supposed to be our time to relax, do homework or socialize, but up to this day I never had a chance to do either.

After dinner, at, it was time for aerobics. I was told I had to go down to participate, but I wasn't able to do anything physical. It surely wasn't fun standing there while the other kids were playing kick ball.

The next day I talked to Dr. Betty between appointments and she said I could participate in aerobics if I wanted to that night. But, when I did, my chest got tight, I started to wheeze, and one of the kids had to show me how to get back to 7-Goodman.

"Get an epinephrine ready," a pudgy nurse said as she started a breathing treatment and handed it to me. "Concentrate on your breathing. Sit straight. Concentrate on your breathing."

I did as I was taught those first few days. I concentrated on my breathing, and soon I was able to take in a normal breath, but it didn't come until the treatment was almost finished. I almost bought myself my first Denver Epi that night, but it wasn't needed.

The next day I had to do a barium swallow. That's a test to determine if there were any stomach abnormalities. I'm telling you, while I was there they did every test imaginable. They even did an EEG one day because I had constant headaches.

For obvious reasons I didn't do very well in school on these initial days. In my diary I kept writing, "School was boring today. I have to study for exams and I hate it." I was probably antsy about all these tests they were doing on me. Well, plus I was homesick being so far away from home.

Finally it was Friday of week two. I marked my diary: 4-6 weeks to go.

Up to this point I wasn't allowed to participate in any off campus events -- like there was any time for it anyway. Still, it was something that I was really looking forward to. I walked down to the business office during lunch break with one of the other kids and got money.

Along with seeing Ric on regular basis, I also had to see a psychologist weekly. I didn't understand it then, but she was scoping me for the psychological consequences of asthma.
Every night we either had aerobics or swimming. I had to go, but was not allowed to participate that first week. I was wheezing and my chest remained tight.

On day #13 my new friends wanted me to go to the mall with them. I "begged" Dr. Betty to let me go, and she said I could. She also said I could participate in aerobics that night.

But, as I ran around the gym trying to be normal, the asthma beast struck and I became anxious and insisted that I needed a treatment. One of my friends escorted me upstairs, "where Kathy almost had to give me an epi," according to my diary.

The next day school went great. At lunch I rushed up to the bank to withdraw money to spend at the mall, and rushed up to 7-Goodman to eat lunch and get my noon meds. I was wheezing.
After school, and still wheezing after my treatment, Dr. Betty approached me. I had a bad feeling about this.

She said, "John, I've decided you would benefit from being on steroids. We tried you on the basic meds and you don't seem to be responding. You're lips are blue as we speak. I want you to go upstairs to our hospital where we can watch you more closely."

And so slipped my good mood. Here I was at the best asthma institution in the world and my Asthma wasn’t getting any better at all -- it was getting worse.

(To be continued July 5, 2009)

1 comment:

Steve said...

Your description of that place gives me the creeps.

Morning neb treatments were given out on a first come, first serve basis? Thats insane! What does getting up early have to do with neb treatments. Sounds more like a military school or a summer camp,than a treatment center.

Please don't tell me they're still in business. Best asthma hospital in the word or not, Id never go there.