Background
My PS began discussing the surgery I would have in my teens with my parents back in the early to mid 1970s. He was planning to do it himself. But in order for him to do it, the surgery was going to take hours and hours. The surgery would involve moving my mid face and upper jaw forward. Then there would be the construction of my permanent nose. (I had outgrown the nose that PS had built for me when I was five years old.)
My parents received a copy of an article about Dr. Tessier, the pioneer of modern-day craniofacial reconstructive procedures. This was in March 1974. My PS knew him. But my PS wanted to see results of the craniofacial reconstruction five years down the road. He talked Dr. Tessier into coming into KC.
On Sat., Nov. 12, 1977, I had an appt.. to see Dr. Tessier. My parents and I went and waited for awhile to see him. There were other people with craniofacial anomalies and their families. We spoke with some of them. During my appointment with Dr. Tessier, the plans were made for my reconstruction surgery, starting the following year.
In the winter of 1978, my parents met privately with my PS. He told them what was going to happen. Then my parents and PS had a discussion with me. The PS and Dr. Tessier had decided to do the mid face/jaw advancement during the first stage. They would also rebuild my nasal passage. I would be left without any nose between the first and second stages. At the appt.. in the winter of 1978, I remember PS showing me pictures of one of his patients with a prosthetic nose. I was like WOW. He was going to have a prosthetic nose designed for me that would be attached to my glasses. During the surgery in Oct. 1978, the plans got changed tho.
From the fall of 1977 to the fall of 1978, I spent many nights lying in bed wondering what was going to happen to me. I cried myself to sleep some nights because I was so afraid. I was going to have my jaws wired. And I was very frightened about that.
October 1978
On Sunday, October 22, 1978, I met two of the other girls whom I would be going through surgery with. Both girls had Apert's Syndrome. One was the same age as me and the other was nine years old. We already knew my surgery would be on Monday, October 30, 1978. We had a tour of the areas where I would be during our stay at Children's Mercy Hospital. The clinical nurse specialist showed us the parent care unit (where we would stay the night before our surgery), holding room, ICU (where all of us would go after surgery, and % North (where we would go after ICU and be for the remainder of our stay). I remembering telling my mom that there were no color televisions in the rooms. The hospital only had black and white TVs at the time. I remember having to play with a bear. I was 14 years old too. LOL LOL The bear was part of the play therapy. All three of us took turns bandaging the bear. I am sure that I had the most stupidest look on my face. LOL LOL It had been a good weekend.. My maternal grandparents had me spend the night with them that Friday because we went and toured some expensive homes. The next day, Saturday, we had a very early Thanksgiving dinner because my jaws would be wired when Thanksgiving came around.
On Sunday, October 29, 1978, my parents and I got up very early. I remember that it was the first Sunday we were back to standard time and the sun rose around 6:45 AM. We got ready because we had to be at the hospital by 8 AM. The hospital is like a 20 minute drive for us. Our appt.. was for 8 AM. I was the very first patient Dr. Tessier saw that morning. I remember asking one question.. About hair shaving.. Maggie, longtime surgical nurse of my first PS here in KC said, "No." I was relieved to hear that at the time.
It was check-in time for me. My parents and I went to Admitting. They were asked the standard questions. Then we were taken to a room in the Parent Care Unit. I believe that the room was 228-T. It was a nice room with a bed for me and a bed for my mom. It almost looked like a motel room. The room was done in yellow, orange, and red.
Then the parade of medical personnel started. I remember one of the doctors telling me that I would have a tracheostomy. Talk about a surprise!! I had no idea that I would have a trach 'til that day. We talked to the anesthesiologist and I told him what I wanted... Mask and no premeds.. Both my mom and I told him NO PREMEDS. I remember being taken to the treatment room so I could have several tubes of blood drawn. I had to have blood drawn for CBC and cross and type match. I would be having transfusions during the surgery.
After all that was done, my parents and I got a pass for the afternoon. We went to the Westin Crown Center to look around for awhile. We got back to the hospital in time for dinner, which wasn't much of a meal.
I remember waking up a lot during the night. I knew what was coming so I didn't sleep too soundly. (I never do the night before a surgery.
My dad came to the hospital around 6 AM. I knew that since my surgery was scheduled for 8 AM, I would go to the OR early. I was taken to holding at 6:45 AM. Both my parents were allowed to come into holding area, which was very small area. They took me to the OR, Room 1, at a little after 7 AM. I can still remember the time I was put under. It was about 7:10 AM. I would be in the OR for over ten (10) hours. The tracheostomy was done first. During the surgery, Dr. Tessier advanced my mid face and upper jaw 3/4 of an inch. They took bone from my right hip and shin. I had an abbe flap done. That's where skin is taken from the lower lip to add more fullness to the upper lip. Since I was in stable condition and doing so well. Dr. Tessier and PS decided to start my nasal reconstruction. They had already taken my old nose to use it as the lining for my my new and bigger nasal passage. They took the skin from my forehead to build my permanent nose. This required shaving the front part of my head. The forehead and abbe flaps would remain attached for two weeks at least.
In the evening, I woke up in ICU. My parents were there. They were allowed ten-minute visits once per hour. My dad would tell me years later that the first time he saw me in ICU that he nearly passed out. My mom told me later that she couldn't recognize me except for my blue eyes. Why? I had tubes running every which way in and out of my body. I had at least one IV running. An NG tube sticking out of my nose. I had a foley catheter to drain my urine from my bladder. I had leads for the heart monitor above my bed to track my heart rhythm. I had a trach tube that was hooked up to a mist machine. I had a huge bandage on my head and my lips were sewn together. In the words of my mom, I looked like I had been through a war.
The first 12 hours or so I just communicated by hand signals. The next day I started communicating through written notes. Don't ever ask me how anyone read my handwriting.
I remember one of the doctors in ICU wanting to give me a shot of morphine. I just laid there and shook my head NO. Everyone seemed to think that I was an incredible amount of pain just by looking at me. I wasn't.
I remember the hallucinations.. I would dream that I was in other parts of the hospital. It was a trip.
My parents spent the nights in my room in PCU. They were allowed to use that room until I got out of ICU. I would ask about the two girls who had underwent surgery.
I remember sitting in a chair before I was transferred and it took two nurses to life me in and out of bed.
November 1978
Finally on Thurs., Nov. 2, 1978, I was transferred out of ICU. I was transferred to a private room on 5 North, where I would remain for the rest of my hospital stay. My mom slept on a chair bed in the room. She stayed nearly every night with me until I was released.
From the time I got in the room until after the release of the flaps, the mirror on the wall was covered. No one wanted me to trip out on how I looked. I looked pretty bad in those days.
I remember my first meal.. A tray full of liquids. I had to eat out of a syringe because my lips were sewn together. I had had the NG and Foley tubes pulled before I left ICU. I had a frame over my bed because I had an open graft on my right inner thigh. The skin from there was used to cover my skull while the forehead graft was attached my nose.
I think that the next day was the first day I was allowed out of bed and into a wheelchair. Mom and I would wander the halls. I also spent a lot of time in the lobby. There wasn't much I could do.
I had IVs running through me for a week. On Sun., Nov. 5, 1978, my IV that had been in since surgery started to pop out of the vein. So I had to have another one started. The IV went into the crook of my left arm. I couldn't really use my left arm 'til the IV was taken out the next day.
On Mon., Nov. 6, 1978, I was a little more mobile. That week I started getting up and walking a little. I started some schooling that week too. A teacher came around to the floors every weekday.
It was during this week that I found out about a boy who was in the burn unit. One of his cousins had poured gasoline on him and set him on fire. The little boy had more than 90 percent of his body burned. I can remember his family standing at the window of the room he was in.
I also met D. and E. D. was undergoing an evaluation for short stature. E. had gotten his one of his legs caught in a freight elevator the day before my surgery. D. and I became friends during that time. D. wasn't much older than me. It was so funny because mom was pushing me in the wheelchair the day D. was admitted to the hospital... D.'s mom commented on the huge stuffed dog that was sitting by my bed in my room as she walked past the room. LOL D. and E. became pals so they eventually shared a room for awhile. I remember one night they had a sign on their door.. It said WOMEN ONLY.
I met a 15 yr. old boy who had been in a car accident when he was younger. He lived at the hospital and had lived there since 1970. The accident killed his mother. He was left paralyzed from the neck down. He was on a respirator and used mouth sticks to control various things in his room. He lived in the room next to the one where I was. I got to know K. and some of his visitors. K. was very bright.
I had a really scary experience and one that taught me many lessons. My PS had left for a few days to go to a conference in Miami FL. He had told the chief resident to stay behind to look after patients. Well, guess what?? Chief resident went off to FL!! We were left in the care of an idiotic resident. Well one evening I had a damn mucous plug caught in my trach and I could hardly breathe. He took his sweet time about changing the trach tube. I am lying there thinking "Hurry, hurry, you idiot." My PS was furious with the chief resident for going to the meeting in FL. You know what?? PS never left town after that. And the chief resident was pretty much blacklisted by my PS.
My youngest brother would come to visit. During some of his visits, he would get into wheelchair races with other kids on the floor. They would have wheelie contests too. LOL This went on until a nurse told them to stop.
I finally hit the low point of my hospital stay right before the second trip to the OR. I remember the night my mom told me about my hair. I went ballistic even though I couldn't talk. I was very angry. I even wheeled myself out of the room. That's how pissed I was.
I had to deal with another OR trip right after she told me. I had to deal with the other craniofacial patients leaving the hospital and I was still stuck there. I remember the day before the second OR trip quite well. I was still in a pissed off mood about my hair. It was a good thing I couldn't talk. LOL LOL One of the nurses whom we had gotten to known during my hospital stay brought in her wedding album. She had been married not too long before that. I remember the lab tech coming in and sticking my finger while we were looking at the pictures. I also acted like I was asleep when the hospital teacher came by for my school lessons earlier that day. LOL LOL That evening I was weighed. I weighed fifty-nine (59) pounds. The day I was admitted, I had weighed seventy-five (75) pounds. I believe that I lost 20 pounds in two weeks. That evening I had a student nurse assigned to me. I was depressed and pissed about my situation. The last of the other craniofacial patients had gone home that evening. I didn't like the student nurse taking care of me. ha ha ha So I told my mom to get her out of my room and she did. LOL LOL I never have been the perfect patient. LOL LOL
On Wed., Nov. 15, 1978, I went back to the OR. Mom was with me in holding. I was taken to OR #2. It was a trip when the anesthetist hooked up the gas to my trach.
On Thurs., Nov. 16, 1978, I started to get really weaned from the trach. By Sat., I could start to use my voice. I can remember one mom bribing me with a gift to get me to talk!! LOL That Saturday, D. tried to get me to talk about my hair and I wouldn't. I could not talk about the issue. On Monday D. was released and I was getting rid of the trach tube came out of me.
On Tues., Nov. 21, 1978, I was finally released form the hospital. I had been in the hospital for twenty three (23) days.
I can remember sitting down to Thanksgiving dinner and drinking a milkshake and mashed potatoes out of cups.
My diet was so thrilling for those 6 weeks and four days. LOL
December 1978
I began homebound teaching in that month. I had over three months of homebound teaching.
I remember celebrating Scott and my mom's brother's birthday. There was cake and of course I couldn't have any. :-(
The big day arrived, Fri., Dec. 15, 1978. This is the day that I got my jaws unwired and the last set of tubes put in my ears. I remember going to the Same Day Surgery unit. My mom and her dad was with me. I had to go through the usual battery of tests and questions. My mom came to the holding area with me. I went to OR #1. I have no idea what time I was put under. I was sick afterwards so I couldn't eat pancakes, which I wanted to eat for my first meal.
That same day we found out that the little boy who had been set afire by his cousin had died. He had been taken to ICU when his stomach burst and he died. :-( That was a tragic story. :-(
I remember my first outing. It was Christmas Day.. We went to my mom's brother's house to celebrate for the day. I also believe that we visited my paternal grandparents within that same week.
January 1979
I remember ringing in the new year at my house. I wasn't allowed to go outside of the house very much. My trips outsde of the house were limited to doctors' appointments or my maternal grandparents' house. So my brothers and I had some friends over.
My nostrils were starting to close up on me. PS tried putting the smallest stints in he had. They were hard plastic and they would not go in at all. Guess what?? Another trip to the OR. :: SIGH ::
On January 25, 1979, I had to go to Research Medical Center to have stents put in my nose. I remember checking into the ambulatory surgery area and then going to holding. My mom was with me. Then it was off to the OR for the fourth time in three months. I remember being wheeled to the OR and being put under. I then remember waking up in Recovery. I think that I was in the OR for less than 45 mins. The stent insertion began my long affair with the nasal tubes. :-)
February 1979
I was getting bored being at home. During this month, I went to visit one of the girls who had had surgery with me. I went and spent a day at her school. It was an all-girl Catholic school. Towards the end of the month, my PS asked me if I was ready to go back to school. I told him and my parents YES. It was getting boring being at home. I was ready for some social interaction.
During this month, there was some sad news for my oldest brother, David. His good friend, Jim, was stricken with a some kind of virus that affected his spinal cord. He awoke one morning and couldn't move. He was rushed to the hospital but the damage had been done. :-( Jim would never walk again. The virus had attacked and destroyed his spinal cord. Jim lived for fifteen (15) months but died of complications from pneumonia in May 1980. :-( He lived at the hospital for those fifteen months
March 1979
On Monday, March 12, 1979, I finally returned to school. I had left school on Fri., Oct. 27, 1978. My parents and PS were surprised when I replied that I wanted to go back to school. Mom thought that I wouldn't want to return to school until the next round of surgery. I can remember what I wore that day: A navy blue pantsuit that my parents had given me that Christmas, a ribbed lighter blue turtleneck, and my earth shoes. One of my friends and her mom took me to school that morning.
I wore a wig to school because my hair hadn't totally grown back in. I hated the wig. I wore it one day and the next day I went to school without my wig. Someone asked my brother about that and he told them what happened.
It felt good to be back at school. I had had a ton of support from the school. A lot of classmates had sent cards and gifts. A friend and her friend went to many different classes for students to sign cards for me. One was passed around at Christmastime and another around Valentine's Day.
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