Thurs., Sept. 11, 1997
This is my first full day home from the hospital. I got up at 12:30 PM since I didn't go to bed until 3:30 AM. Nothing uneventful happened. I still cannot talk. I can't wear my glasses. I still can't use my partial. I spent an hour switching out the CDs in my CD player. While I was loading the CDs, I had some drainage from my nose.. Nothing serious. It was the last episode of drainage I had.
Fri., Sept. 12, 1997
HAPPY DAY!!!
My new pc from Gateway came today. I was not expecting the pc for another 2 1/2 weeks. I was so excited!! Mom was mad because she had to deal with Gateway all morning for me. I love my new pc!!!!!! It's a great thing to have as I recover. :-) My computer ended up being my connection to the outside world for the first two weeks after my surgery.
Sat., Sept. 13, 1997
I spent all day on the computer after I got up. I was on IRC for 10 hours. About 2:45 AM, I decided I wanted to see what was under the tape on the right side of my nose. There was only a stitch or two in the incision and it was healing well.
Sun., Sept. 14, 1997
Another day spent on the computer. :-) The liquid diet is starting to get old real fast. I am still without glasses and partial. I am starting to use my voice a little more. I can't talk for long without starting to gag. I am starting to lose my dissolving stitches in the back of my throat.
Mon., Sept. 15, 1997
I went to see my PS for the first time since I was released from the hospital. My dad took me since I don't drive. My dad and I spoke with a mom and grandma of a three-year old girl with CHARGE Syndrome. She had been born with a cleft palate. The little girl had had palate surgery on Tues., Aug. 19th.
My dad went in with me to see the PS. PS could tell that there is improvement in my nasality. He took out the stitches in my nose. He let me wear my glasses for a couple hours at a time now. But I am on the full liquid diet and cannot use my partial for another week. :-( I see my PS again in two weeks.
I will now see him in the cleft/craniofacial clinic at St. Luke's outpatient center.
Tonight my almost three-year-old niece, Ally, told me to put my teeth in as she was leaving. LOL Ally's mom and I just laughed ourselves silly. LOL I could tell my sister-in-law was embarrassed by her daughter's comment.
Wed., Sept. 17, 1997
Tonight I thought about putting my partial back in. I told a couple of friends online about it. They told me to be careful.
Thurs., Sept. 18, 1997
I did not put my partial back in after all. I decided to wait until Monday.
Fri., Sept. 19, 1997
I got my hospital bill today. The bill was $9169.02. I owe at least $200 on it. It remains to be seen how much my HMO will pay on the remaining bill since I had to use another hospital.
Ally told me again to put my teeth back in. That little girl is sooo observant!!!!
Sun., Sept. 21, 1997
This was my last full day of my full liquid diet and no partial. I spent the day counting down the hours until real food and using my partial. :-)
My dad tried to talk me into cheating on my diet and wearing my partial. I wanted to prove to myself that I could stick to the restrictions. I did not cheat.
Mon., Sept. 22, 1997
OH HAPPY DAY!!!!!!! :-)
The first thing I did when I got up at 8:42 AM was to go upstairs and put my partial in my mouth. That was the weirdest feeling. I have never had a partial out for more than a few hours at a time.
The first meal I had was a piece of french toast and an omelet. It was heaven!!!!!!! I ate slowly tho.
The second meal I had was turkey breast, mashed potatoes, stuffing, and cranberry sauce.
Here's the post I posted to a listserv:
Hi,
It's been two weeks since my surgery.. I am one happy camper this morning!!!!!! For all the new people here, I had surgery to remove some hardware (wire) from the right side of my nose and a revision on my pharyngeal flap.
First of all, I can wear my partial again!!! Anyone know what it is like to to go without your partial at all for two weeks postop???? It isn't easy!!! I have to get used to having it in my mouth again.
Secondly I can eat REAL FOOD again!!!! I ended up losing some weight - I don't really know how much plus I would never post the amount to the list. Let's say I will be supplementing with Enusre or some caloric drink for awhile.
My diet was much stricter this time than when I had the flap originally done in March 1981. By the time I left the hospital back then, I was on a puree/soft food diet.
I never cheated on my restrictions and I am soo proud of myself for that!!! There were times when I wanted to cheat but I didn't. This is what kept me going: I did not want to risk having to go thru the surgery again.
Here's my meal plans for today: a piece of french toast and an omelet this morning, maybe a pizza for lunch
I am healing well.. The incision on the right side of my nose looks great!!! Do NOT try this at home - I had pulled the tape off about 30 hrs. before it was suppose to come off and the incision was well on its way to healing. The way my PS stitched it was with one stitch in the middle and then two long strands on either end. I still have one dissolving stitch left in my pharyngeal flap revision. But I figure that I will lose that stitch before too long.
I go back to the PS next week... I am not using my nasal tubes right now.. He wanted to see how I would do without them. Unfortunately it looks like I will be back to wearing them again.. The columella isn't strong enough to keep the nostrils opened. (PS did not work on columella - He is not willing to risk the blood supply to it.- And I don't blame him.) But who knows?? I may have to have the reconstruction on it in the long run.
No one really knows how happy I am this morning.. Not even my parents LOL
Finally I want to thank soo many people who chatted with me thru my two-week diet!!!! Thank you to all the people who sent prayers and good thoughts to me during surgery and my recovery!!! Believe it or not, I felt your presence in the OR two weeks ago!!
I will close for now.... I am off to eat my first real food in two weeks!!!!!
Hugs, Kristi
It was a good day overall. I ended up waiting to eat my first pizza a week later.
Wed., Sept. 24, 1997
I got the bill from the anesthesia group... $1210 for professional fees. I hope that my insurance covers this.
I got a call from Tracey, my good friend in OH. She could not believe the improvement in my speech. My family has told me that I sounded better but I am with them a lot.
Fri., Sept. 26, 1997
Today was the first day I had heard my voice since surgery!!
My dad's oldest sister and her husband came over to visit. My aunt couldn't believe the improvement in my speech. She said that she could understand me much better. A little late that afternoon, I was talking with a friend of mine from a listserv and I was telling her how people could tell the difference in my nasality. She said that she wanted to hear it. I quickly made her a sound file and emailed it to her. She received it fairly quickly as were chatting. She couldn't believe the difference. She then asked me to send it someone else. I sent it to someone else. I bet I sent 15 .wavs in just a couple of days. hehehehe
That night I ended up recording my new greeting for my gallery pages. Me being so picky had to make two .wavs before I was happy.
Mon., Sept. 29, 1997
I went back to see my PS. He wants to me t go thru a speech evaluation in November. I am bummed about this. But Mom was right.. She knew that I would need speech therapy.
That evening I called my parents while they were visiting Colorado to let them know about the appt. I told Mom about that speech evaluation and she had pretty much figured that I would need some speech therapy. I am still bummed: I wanted to look for work for financial reasons. Now I am toying with the idea of going to school.
Thurs., Oct. 9, 1997
I got a call from Anna at the clinic.. My speech evaluation is for Tues., Nov. 18th at 3:00 pm.
Sat., Oct. 11, 1997
The stitch that is in the back of the left side of my mouth finally came out. YAY :-)) I had told my PS about it at my last appt. and he looked at it and said that it was about ready to pop out. He said he wasn't even gonna take it out. I didn't blame him. hehehe
Mon., Oct. 13, 1997
I have been doing lots of thinking about my future lately. It is kind of hard to adjust to the idea of having speech therapy again. (This will be my first round of it as an adult.) I had really wanted to go back to work. I have decided that school might be the best option for me now. I want to be a web designer in my spare time. :-) I am thinking about going for an MIS degree.
Thurs., Oct. 16, 1997
I made a not-so-pleasant discovery at 1:20 am. I looked in the mirror and there was a bump on the left side of my nose. I had noticed it but it didn't hurt. I had visions of another wire trying to poke thru the skin.
I waited until later in the day to say anything. I told a friend and she was like "Oh no!" Then I told my mom and she was like "oh no not again!" Mom was kind of upset for me. I told her that I would call the clinic on Friday to see if I could get an appt. on Monday.
I am totally bummed about the bump. I just had surgery 5 1/2 weeks ago.
Fri., Oct. 17, 1997
I called the clinic and have an appt. with my PS on Monday morning. I told some more friends and their reactions were pretty much like everyone else's.
Looks like a long weekend ahead
Sat., Oct. 18, 1997
I made another unpleasant discovery: My nostrils are started to close up. :-( I haven't been using my nasal tubes since surgery because PS wanted to see how my nostrils would do without the tubes. Looks like I am back to using tubes again. :: SIGH ::
Sun., Oct. 19, 1997
I just can't help feeling sorry for myself this weekend. I hate when I get like this but sometimes I just can't help it. A lot of things are bugging me these days. Tomorrow I see my PS so I will know more and that will help ease my mind some.
Mon., Oct. 20, 1997
I went to see my PS today... The bump on my nose is just a bone. PS said he couldn't feel a wire poking thru. THANK GOODNESS!! My nostrils are definitely closing up.. I will be back to using nasal tubes again. :-( I really enjoyed my six-week freedom from them. It sounds like PS is leaning towards doing surgery on my columella and tip. It will be risky since the blood supply is pretty questionable. He will consult with my retired PS. I have to go back on Tuesday.
Tues., Oct. 21, 1997
I went back to see my PS today. My right nostril has closed to the point where I cannot get the tube that I had been using in anymore. He had to use a different kind of tube. I definitely look unique now.
Wed., Oct. 22, 1997
I have been doing lots of thinking today.. I am trying to work on accepting everything that is happening right now but it is soo hard. I don't have to like it but I know I have to accept it. As the time is going on, I am starting to accept the idea of having speech therapy. I sometimes think "Man I can't believe I am going thru this at my age." I think about all the reconstruction I've been thru. It blows my mind to think how long I have been down the surgery road. I just shake my head in amazement at times. Even us seasoned pros have our moments. :-)
Fri., Oct. 24, 1997
I posted the following to a listserv in the wee hours of this morning:
Hi,
I just wanted to tell you that I have felt sooo much better now. I feel fairly peaceful about everything now.
My future plans weren't going to include speech therapy or a possible surgery a few weeks ago. I just had another reconstructive surgery. I really wanted to be working next year. But trying to schedule speech therapy appts. around a work schedule wouldn't be feasible for me since I don't drive.
So I have to kind of go back and re-think my plans. School is probably a good option for me at this point. Whether I attend full-time or part-time this winter is another thing.
Having to use the nasal tubes wasn't really what I had in mind... But I have to use them. Without them, my nostrils would eventually close up. Hopefully my PS and I can come up with a solution where I could use them for nighttime use. Maybe we can come up with a solution where I can get rid of them altogether. I am willing to compromise on using the tubes for nighttime use.
I've had to think a lot about the speech therapy thing. That sort of threw me for a loop since I wasn't expecting that. Now I am like "Hey this could be really useful. It will make the revision even better." I am happy that I went thru the surgery because there has been marked improvement in my nasality. I hope that the therapist I work with is very knowledgeable about clefts and has worked with adults with clefts. The important thing to me is working with a therapist who is knowledgeable about clefts. I am actually looking forward to my speech evaluation in November.
On the surgery... I know it is a possibility.. I will know more at my appt. in November. I am not going to dwell on it. I am gonna go on doing what I do best.. keeping busy, working on webpages, spending time with family and friends. I am gonna go on with my life. PS tells me that he is going to do the surgery, then I want to get the ball rolling with the insurance.
I owe my acceptance of the nasal tubes, possible surgery, and speech therapy to the journal that I am working on. I have the journal uploaded to my homepage now. It is updated thru Wed. The journal chronicles the planning and preparation for my surgery, the surgery and the hospitalization, and the recovery. Be warned: It is detailed and candid. :-)
Yeah I've had a lot thrown at me lately but I am OK, thanks to my friends here on CT. :-) I would have never made it without you. THANK YOU for being there for me!!!
My mom and I talked today some. She is really worried about me losing my health insurance coverage at the end of July next year. So I am more than likely going to go back to work. Maybe I can go to school part-time. She can tell that I am frustrated by my circumstances. She hit the nail on the head - I am living in limbo. I wish Nov. 18th would get here. Thanks Mom for being intune to me!!
Thurs., Oct. 30. 1997
Today is the anniversary of my big surgery. Here I am 19 years later healing from my latest surgery. My how time flies. It still blows my mind at times that I am still going thru my reconstruction.
Fri., Oct. 31, 1997
Leave it to me to do something totally dumb.
Sat., Nov. 1, 1997
I have decided to do an experiment with my nasal tubes. I am going to pick a week either this week or next to leave the tubes out during the day. I know I can leave the tubes out for most of the day. It's just that I cannot leave them out al the time. My goal is to be totally rid of them eventually. But if that doesn't work, I can compromise on using them at night.
Mon., Nov. 3, 1997
I think today is the day I start taking the tubes out during the day. I will write what happens each day.
I have really noticed how much the swelling has gone down in the area of my pharyngeal flap. I can't believe it has been eight weeks since my surgery. Time is flying. The next big steps are my speech evaluation and the appt. with my PS on Nov. 18th.
Wed., Nov. 5, 1997
I have decided not to do my experiment for now.
Thurs., Nov. 6, 1997
Deloris called me this morning. My appt. has been changed to Mon., Nov. 24th. She thought it would be better for me to come in that day instead of the clinic day. Here's what will happen on the 24th: See PS, do speech evaluation, and have another nasometry test. I can't believe it has been eight months since I started this chapter in my life. It's been a long haul.
Thurs., Nov. 13, 1997
There isn't really much to write about these days.. I am still waiting for Mon., Nov. 24th to come. Just 11 more days.. I do a lot of thinking these days.. If I do have to have the surgery on the columella, I would like to schedule that surgery for right after the holidays.
I've also been doing a lot of thinking on the school thing... I think that maybe I will hold off on that until I find some employment. I need the money and I need to be doing something badly. And I've noticed that I have some really bad sleeping patterns as of late. I need to get on a schedule and I kind of had that when I was working.
I wish the 24th was here because I am tired of waiting.
Sun., Nov. 16, 1997
Just eight more days until my appt.
I've decided to do some things:
- Cut back on chat time.. I am finally going to cancel AOL this week for the third time.
- Going for the forum manager's spot for Midwest States on DELPHI (Another thing to add to my resume).
- Going to start putting the feelers out for work - I've decided to start sending some resumes out and post my resume on my homepage.
Fri., Nov. 21, 1997
The following note that I posted on Cleft-Talk says it all:
Hi, I am still here... Just waiting for Monday to get here... Two of my biggest questions will be answered then:
The first question: How much speech therapy will I have to have?? Mom and I have been talking and she says not much. I say not too much either.
This will be my third round of speech therapy in my lifetime.
The second question: Will there be another surgery in my future?? If so, how long do I have to wait?? There's a lot of ifs here... But I am anxiously awaiting my PS' answer on this. If I do have to have surgery, I want to do it before spring.
If I do have the surgery, it would be my twenty-fifth reconstructive surgery, or my thirty-fifth overall surgery.
I have accepted having speech therapy and possibly another surgery. I just need to know when things are going to happen so I can start planning the next phase of my life. :-) I love living in limbo.
I just want Monday to get here.
Sun., Nov. 23, 1997
Tomorrow's the day finally!! I will be very anxious to hear about my speech and what PS has to say.
I am starting to get just a wee bit nervous about it all. But I will be fine.
Tues., Nov. 25, 1997
Yesterday turned out better than I thought. :-) This will be my last entry in this journal. I will start a new journal about my trial run of speech therapy after the new year. I will also do a new journal when the next round of reconstruction comes around.
This is the post that went to two email discussion groups on Monday, Nov., 24th:
Hi,
Got lots to share here...
First of all, I need to thank everyone who has been by my side thru this very long process!! I don't know what I would do without you!! THANK YOU for being there for me.
First off, it looks like a columella reconstruction with cartilage graft down the road for sure. PS told me that there was a 10% chance that the columella could give. I told him that I knew the risks. And I do. That surgery will probably happen about a year from now. I go back to see my PS in early February when he re-evaluates things with my nostrils. PS is merely considering working on them again.. But he is very cautious on that one. The big thing for me will be the work on the columella. Bottom line: I have a reprieve from surgery for while. YAY :-)
The next thing... speech evaluation. I had my speech eval. The surgery did what it was supposed to do.. make me sound less nasal. I had a nasometry test. I just have a few sounds to work on. I will be doing a trial run of six weeks of speech therapy with one of the graduate-level speech pathologist at one of the medical centers. That person will be supervised by the two speech pathologists who evaluated me today. I will start my trial run in mid January after the spring semester starts. I told both the speech pathologists how important it was to work with someone who is knowledgeable about clefts. That's when they said that they would have me come to their center.
I need to mention here... I was asked about my sleeping. Apparently they are intuned into sleep apnea with people with pharyngeal flaps. I was really glad they asked.
As I was talking to my mom on my cell phone on the way home, I told her that my next goal is to get a new partial made. The one I have now has outlived it's usefulness. I told Mom that I wanted to go back to my prosthidontist and see if he will make me a new one. Of course I would have to make payments since I don't have any dental insurance right now.
Some other news.. I decided not to say anything about this until now for personal reasons... In October I got a call from my PS' office... They needed updated pictures of me. They needed the pictures because my PS was going for his oral boards. The reviewers chose my case as one of his eight cases. We were talking about his upcoming boards and he was telling the photographer and I how he hates to be put on the spot. LOL He was talking about it being torture and I told him that we all have to have a little torture in our lives. :-) The first thing out of his mouth after he greeted me was that he was grilled and we won. LOL I have to laugh at the thought of him answering questions because I have picked and chose what I have wanted done since I was 18. LOL I knew he would pass his boards.
The next thing to do is JOB HUNT!!!! I am really looking forward to going back into the workforce. I am looking forward to having money again soon. LOL
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