The Preparation

March 1997

Wed., March 5, 1997

I went to see my PS on this date. He wants me to go thru one last cleft/craniofacial team evaluation. It will be done at the cleft/craniofacial clinic at St. Luke's Hospital of KC. PS wants to do a nasal endoscopy and a nasometry test, which measure airflow because wants to see if there is anything that can be done to improve my nasality. I will have to get an approval from my HMO. He says this should be my last surgery.

April 1997

Mid April 1997

I received the approval from my HMO for the evaluation.

May 1997

May 1997

I have received another referral for the evaluation. This one included a couple of things that the other referral did not.

Fri., May 23, 1997

I have the appt. for my evaluation on Tues., June 24, 1997, at 1:00 pm at the cleft/craniofacial clinic at St. Luke's Hospital.

June 1997

Wed., Jun. 11, 1997

I discovered a bump that has come up on the right upper side of my nose. I called the PS' office and his nurse wants me to come in today to see him. I have an appt. at 3:45 PM. Before the appt., I am a little nervous because I am not sure what it is. He takes one look at the bump on my nose and touches it and says that it is a hardware problem. He tells Sydney to start the approval process to get the surgery done at St. Luke's Hospital where the cleft/craniofacial clinic is because the hospital that the HMO uses does not have the right equipment.

Tues., Jun. 24, 1997

Today was my cleft/craniofacial evaluation. My dad took me to the appt. We got there a little before 1:00 pm. I had to register as an outpatient and give the people a financial statement. My dad and I went up to the fifth floor to wait. At 1:40 pm, I was called in.

First they did a hearing test. My hearing has pretty much stabilized over the years. My hearing is within normal range in my right ear. I have a 40 percent hearing loss in my left ear due to a conductive hearing loss.

Then I spoke with the speech pathologist and a student. Then my PS came into the room. My dad, PS, the speech pathologist, student, and I discussed my history.

Then it was time for my first-ever nasal endoscopy. They took me back to the GI lab. My dad refused to watch so he went out to the waiting room to wait for me. My PS did the nasal endoscopy. He squirted a few drops of local anesthetic into each nostril. Then inserted the scope into my nasal passage and back into the pharyngeal flap. He took four pictures of the flap area. He noted that one of the ports was larger than the other. I had to say some silly tongue-twisters too. :-) There was a roomful of people to watch the procedure: My PS who was actually doing the nasal endoscopy, the team nurse, a nurse from the GI lab, and the speech pathologist, and the student. The nasal endoscopy was not bad at all. However, I was left with an irritated nasal passage for a few hours.

Then it was time to meet with the speech pathologist and student for the nasometry test. My airflow ranged from moderate to severe on many sounds. The speech pathologist and student told me that the problem was not speech-related. I believe my speech was 75% intelligible.

Then I met with the team nurse, Deloris. We were talking about my history a little. Then PS came by. Then the team oral surgeon came in for a minute and was impressed with the bonework that Dr. Tessier had done.

Then I saw the team dentist for a bit. She took note of my partial.

Finally I met with the team ENT, who recommended either surgery or a hearing aid to correct the loss. It's a loss I have lived with for years and have never done anything about it because I've learned to compensate for it.

July 1997

Fri., July 11, 1997

I got the results of the cleft/craniofacial evaluation.. The results were what I had expected.

I have velopharyngeal insufficiency.. My palate is too short. Surgery is indicated to tighten the right port of my pharyngeal flap.

Thurs., July 31, 1997

I felt frustrated as I had not heard anything from the PS' office and my HMO about my approval. I sent a long message to a listserv that I am on about that.

August 1997

Fri., Aug. 1, 1997

After a long wait, I finally got the approval for my surgery. I got the word today from my plastic surgeon's office. I will have the surgery done at the hospital where I was born and had my lip repair.

Week of Aug. 4th

I received my official referral from my HMO in the mail.

Wed., Aug. 6, 1997

After talking with the craniofacial clinic coordinator, my surgery has been scheduled for Tues., Sept. 2, 1997, at 7:45 am. (If a baby or small child is scheduled for that morning, my surgery will be a little later that morning.)

Mon., Aug. 11, 1997

Upon arriving home from Sacramento, my dad announces that I have an appt. with my PS at 10:30 am at the cleft/craniofacial clinic. What a greeting when I get home from an awesome weekend in CA. :-)

Tues., Aug. 12, 1997

I went to see my PS. The game plan is to remove the hardware that is trying to poke thru the right side of my nose and tighten the right port of my pharyngeal flap. PS talks like implants might be an option but it would take lots of bone grafting. He called in the director of the cleft/craniofacial clinic and he will be assisting with the tightening of the port part of the surgery. Since the other PS will be assisting, the surgery has to be rescheduled because the assisting PS will be on vacation on Tues., Sept. 2nd. It is rescheduled for Tues., Aug. 26th at 7:45 am.

Fri., Aug. 15, 1997

I left for a five-day trip to Colorado. It was great getting away again. I didn't think too much about my upcoming surgery.

Thurs., Aug. 21, 1997

Today I went for my preop labs. It is starting to become a reality. My surgery is just five days away. I am starting to get a wee bit nervous.

Mon., Aug. 25, 1997

It's the day before surgery. Anna Woods, the coordinator called to say that the HMO hadn't sent over my results from my labwork. I got a call from St. Luke's preop giving me all the instructions. (Like I haven't heard them before. LOL) I am to be there at 6:30 AM. Anna calls me back around 3 PM to tell me my surgery has been rescheduled for a little later in the morning. I don't have to be there until 9:00 AM. That will give me sometime to go online and chat with some of my friends before I leave for the hospital. I am starting to get a little nervous. I went to a visitation. I ate my pizza between 7:30 and 8:00 PM. I drank five glasses of water between 9 PM and midnight. I go to bed at 2:40 AM.

Tues., Aug. 26, 1997

At 6:35 AM, my dad comes down and tells me that my surgery has been cancelled. My PS' wife had gone into labor with her second child. The baby was not due until mid September.

I admit that the postponement was really hard to take. I had never had a surgery postponed until then. Yes the adult I am.. I cried over it. It was two young people who put evrything in perspective for me.. my niece and a ten year old. That really helped.

No word on when the surgery will be rescheduled.

Wed., Aug. 27, 1997

I got a call from Anna Woods.. My surgery has been rescheduled for Mon., Sept. 8, 1997, at 10:30 AM. I was relieved to have a new date.

September 1997

Fri., Sept. 5, 1997

I got my call from St. Luke's telling me what time to be at the hospital on Monday. I have to be there at 9 AM. I called Anna to double-check on the time.

Sun., Sept. 7, 1997

I actually had a good night's sleep. I slept from about 1:30 AM until about 10:30 AM. That's the best night of sleep I've ever gotten two nights before a surgery. I drank a total of 10 glasses fo water from 11 AM to midnight. I had my good luck pizza between 6 and 6:30 PM. I chatted on the computer for quite awhile. I've had many well-wishes for the last couple of days. I changed the sheets on my bed. I paid some bills. I slept from about 5:00 AM until around 7:00 AM. I was thinking.. I am going to be sleeping most of the day away anyway. LOL