April 1998
Wed., April 8, 1998
I paused long enough to say Hi to my mom and grandma. Then I came downstairs and logged onto my ISP.
Here's the post I sent to two listservs:
Hi, THANK YOU FOR ALL THE WELL-WISHES AND GOOD THOUGHTS AND PRAYERS!!!! They mean a lot to me!!
I finally made it home about 2:50 PM. (I've already been on IM for an hour. LOL) I had to wait because I had my last course of IV antibiotics at like 11 and that got finished at around 1:15 or so. PS came in and saw me at 12:50 PM.
I got stuck holding for three hours.. My mom and I talked about all my other surgeries. LOL We shared them with my grandma who was there too. I actually had an anesthesiologist listen to me!!! YAY :-) The resident who did my anesthesia was very impressed to be putting out the very first Tessier patient to be operated on here in KC. LOL She worked at the kids' hospital here for several years. Everyone gets blown away by the number of surgeries I've had. LOL
PS was doing a reconstructive surgery before mine and that ran longer than he thought. Then they needed the instruments from that surgery for me. I did not go to surgery til like 1:30 and I guess he came out and talked to my parents at around 4:30. I didn't get up to my room til 6. And I proceeded to sleep for most of the next 13 1/2 hours. LOL
From what I've heard, everyone's happy with this round of surgery.. PS did not do what he planned.. Just too much damn scar tissue. Looks like I will have another round of surgery in at least 3 months. That will be to build up the columella (the piece of skin between the nostrils).
A lot of people asked me about my webpages. LOL So I had to write down all my page addresses. Someone asked me where my laptop was. LOL
Final note: I am without my glasses until probably Monday.. That's when I go get some of the stitches in my nose. I have a ton of them too! Sorry no pics.
Last but not least I am glad to be home!!!!!! :-)
I ate some of my mom's awesome lasagna for dinner. :-)
I just hung out online for quite a while last night. I also took a lot of breaks from the computer too. One of my friends who is a HUGE ER fan too told me that tonight is a new episode. YAY :-)
I took my first dose of oral antibiotics. I am on a generic of Keflex. I take 4 250 mg capsules per day. I will finish them up on Monday at dinnertime. I hope that I didn't end up with a yeast infection. Been there done that.. NO FUN.
The drainage is driving me nuts.. It is slowing down but it is still there. It hit its peak the night after my surgery.
I was adventurous and changed the sheets on my queen-sized bed. LOL Not a very smart thing to do but I managed. :-)
Thurs., April 9, 1998
Mom decided that she had to wake me up at 9:30 AM to tell me to take my antibiotic. I woke up long enough to take the capsule. I crashed for another two hours. I finally got up at 11:30 AM. I went over and signed onto my ISP. I chatted with a couple of people and ended up in a chatroom on DELPHI.
I had brunch.. omelet and french toast sticks. I ate it all. Then I went upstairs and washed my hair. My hair was driving me nuts with all the gunk in it from surgery. I came back down and took my second dose of antibiotic for the day. I also got dressed for the day.
I am trying to get used to the idea that I have to have more surgery in the next few months. I will be anxious to hear what PS has to say about it all on Monday. People were trying to tell me what was going on but my mind was still trying to process everything after this surgery. :-)
I ate all my dinner again. :-) We had chicken and dressing. YUMMY :-)
Sat., April 11, 1998
I talked to my mom today about what had happened with my surgery. I told her that I thought that my brain was unscrambled now. LOL She says PS will do the columella in the next few months. We both figure either August or September before the next round of surgery.
Sun., April 12, 1998
I had Mom take some pictures of me.
Mon., April 13, 1998
OOPS A mistake was made over my appt. today. Someone forgot to flip thru my file for my parents' phone number.
I finished up my antibiotics tonight. YAY :-) I escaped without having a yeast infection!!!! YAY :-)
Tues., April 14, 1998
This is what I posted to a listserv:
I went and had 40 stitches taken on Tuesday morning... The stitches were tight and close to the skin. From my end, the stitch removal was NOT bad at all. D. (Deloris), the nurse, who took them out kept asking.. Does it hurt?? I kept saying "No." Only can I recall twice when she pulled on stitches and it stung for a second. We are sitting there talking and laughing thru the whole thing. LOL It took 30 minutes to take my stitches out. Maybe if we had talked less it might have not taken so long. LOL LOL I've got to wear some tape along some of the suture lines until this morning then I can take it off. YAY :-) Then I am going to start wearing my glasses as much as I can tolerate them.
PS is very pleased at how everything looks.. Everything is more opened.
I do have to massage the right side of my nose to bring that side of it down cuz it is pulling up a little. Anyone ever have to do it for the nose?? This is a first for me.
I have to go back next week to get my stents put back in. I will use the stents until the next round.. Keep your fingers crossed: The next round should be THE FINAL ROUND. And the planning for the next round will probably start happening in June.
Everyone close to me has noticed a difference in my speech for the BETTER since my surgery last week. Don't ask me why.. I don't have the tubes in. I can breathe thru my nose some.
PS wanted to me to talk to the Mom of a six-month old boy born with a form of craniosynostosis... saggital synostosis. I told her a little bit about myself and she told me about her son. Her son had surgery in January and wears a molding helmet to help shape his head.
PS confessed to being on AOL. LOL Deloris gave me her email address. She's on AOL too.
She also busted me too, thanks to my mom. LOL LOL I guess I was sleeping too much for everyone's liking. LOL Mom told Deloris I was up all night talking on my computer. I wasn't up all night.. I went to bed at 3:30 AM, fell asleep before 3:45 AM, and got up at 7:10 AM. I had more sleep that night then the night before the surgery in Sept. I say that they gave me some good knockout drugs this time. LOL LOL
I came home and did some web surfing on craniosynostosis, saggital synostosis, and molding bands. I found some interesting information.
Wed., April 15, 1998
I got to take the tape off my face. YAY :-) It's nice to have nothing on my face! I tried wearing my glasses but they bothered me. I will try again tomorrow.
Thurs., April 16, 1998
It blows my mind that I will be having surgery again in a few months. Three, possibly four, surgeries in one year. That's a lot for someone at my age. I am not really upset by it. I just won't ever ask what happened right after a surgery again. :-) I will wait a day or so next time. LOL (Yeah right, Kristi. LOL)
Fri., April 17, 1998
I wrote the following post about healthcare providers.. I am not anti-healthcare provider at all.. Just wish they would handle some things differently. I cannot believed that I talked about hair shaving three times this week. must be a world's record for me. :-)
Hi,
I must agree with what J. and S. said... It really does work when healthcare providers are upfront. It sure lessens the anxiety and fears. Over the years, I've HATED surprises that healthcare providers laid on me.
I hated people in white coats.. I hated needles.. I hated going to the dentists... I overcame all those fears with little or no help.
I told the list about one problem that I've had in my lifetime with everything... HAIR SHAVING. It totally sucked the way it was handled with me. And that's the one thing I hate now.
The first time hair shaving happened to me when I was 14. I remember asking about hair shaving and someone I trusted told me NO HEAD SHAVE. No one bothered to tell me for two weeks. And guess who told me?? MY MOM!! I can still remember the night she told me. I was pissed... And I stayed that way for two days.. And I was about to undergo another surgery.. In the two days, I kicked a student nurse out of room.. I told Mom that she had no business taking care of me because I had the trach.
The second time was when I was 18. This dumb resident comes into my room and simply tells me.. Wash your hair again... I was standing at the sink in the room brushing my teeth when he came in and laid that surprise on me. Geez I get to holding and all HELL broke loose. I point blank told PS and his nurse.. You are NOT shaving the side of my head... I got all upset and started crying. I cried on the nurse's shoulder. Getting me upset didn't help when it came time to put me under.. Let's say it had its consequences as I was going under..
The next time hair shaving was even mentioned.. I flipped BIG TIME. I was 23 years old. And I freaked in front of a roomful of people. Not the best thing I could have done, I admit. No one bothered to talk to me about why I blew... I was looked at as having a major temper tantrum. Didn't anyone besides my parents realize that hair shaving was a problem for me?? NO!! when I was admitted to the hospital, I was looking over the op permit... In it I had to consent to partial hair shaving.. YES that was written in the op permit. Then PS comes into my room the morning of surgery and says, "You are going throw a fit when they come get you for surgery, are you?" I am like NO. I remember waiting for surgery in the holding area... PS comes up.. He starts looking for my old head incision.. I flat told him that he wasn't doing anything to me right there.
The following year I had surgery.. PS told me that they were going to take skin from right behind my ear. PS didn't come out and tell me that some of my hair was gonna be shaved. I KNEW IT. I remember going to class and coming home and taking a shower before I went to the hospital.. I KNEW what was gonna happen with the hair behind my right ear. I remember grieving over the loss of it.
Right before I went to the OR last week, my dad was in holding room with my mom, grandma, and me... He told the nurse who was going to be in the OR with me that I hated having my hair shaved. She was like "We aren't gonna do that to ya." Now what if I had woken up and found some of my hair gone??? I would have been MAD.
My family knows I hate hair shaving.. I can remember my mom telling me when I was 23 years old.. "Kris, you don't have to like it but you have to accept it."
It's only been thru talking to other people that I've been able to talk about hair shaving. I could never talk about the subject without expressing my feelings.
I am very thankful to my parents who addressed the problems I've had with hair shaving..
My thoughts about more surgery... Why am I in the continuous surgery mode?? I feel like I will never get out of it. :-( I never dreamed of having more reconstruction in my 30s. I've had three surgeries in the last two years. But I have to keep focused on why I am doing this... TO RID OF THE NASAL STENTS. I've worn them round the clock, with the exception of eight weeks, for almost two years.
Sat., April 18, 1998
Gisela was telling me about Ceci's tribute page on Teeter's Page.. Of course I had to go see it. I had tears running down my face reading the sympathy notes. And it just reminded me of Heather, Robert, and Anne. Why do people have to die or nearly die having craniofacial reconstructive surgery??
The ornery person that I am I buddy listed my PS on IM.
Sun., April 19, 1998
I am NOT much of a morning person. Mornings after this latest surgery have not been bad at all. Usually mornings are the worst part of the day for me for a few days after surgery. Maybe it's because I just had surgery back in September. Who knows?? Just makes me even more prepared for the next round coming up in a few short months.
I am certainly am amazed at the results of the surgery!! My nostrils in spite of the swelling are bigger now than they were before surgery!! My 12 FR tube is too small for my right nostril. I bet I can convince PS to put in at least a 14 FR in both nostrils. In fact, I bet I could jump up to 16 FR. Is that amazing or what?? I am psyched!!
I am still massaging the right side of my nose.
I am just realizing more and more evry day that I've got to have more surgery in a few more months. I gotta fill that time in with projects and other things. I know that I will blow away much of the time being online. Geez it's amazing how one surgery has turned into four surgeries.
It feels soooo good to be wearing my glasses again!!!! I started wearing them fulltime on Saturday.
Mon., April 20, 1998
I had way too much fun online in the late night hours. ROTFL Gisela and I were yakking online and I have my PS in my buddy list.
Seriously speaking.. the chats with him were cool.. Gisela shared her end of the conversation with me. Gisela was talking about her reconstructive surgeries and how it changed her life.. He told her this: Its not the surgery. Its the person inside. I thought that was pretty cool coming from a PS. No wonder we get along so well!!! I rather go to my PS than any other.. I trust him.. He's not egotistical at all. He's good. :-)
Tues., April 21, 1998
I am enjoying my last day of freedom from nasal stents.
Well my dad has seemed to forgotten that I have a doctor's appt. tomorrow. :: SIGH :: Normally I would have gone to the clinic but not this week.
Wed., April 22, 1998
I don't know what people's problem is about my surgery.. Geez some people are upset because PS didn't get done what he planned to. Well it's called TOUGH COOKIES!! I wish I didn't have to go thru more surgery. But I have to. I am glad that he held off on the columella part. What if he went and head and did it all?? And it failed?? Been there done that deal where the columella has pulled away TWICE after surgeries. I am glad he didn't go any farther. Hey I think that I can wait a few more months.
Thurs., April 23, 1998
I had an appt. with my PS. Before we could leave the house, my dad's car decided to act up so we borrowed a neighbor's car. We got to the appt. in plenty of time.
GOOD NEWS!! :-) The surgery appears to have been SUCCESSFUL!!!!!!!!!!!!!!!!!!! :-) PS took a look and so did one of his nurses and both are like WOW. I've known for a few days.
Fri., April 24, 1998
Here's part of a post I sent to two listservs...
MORE GOOD NEWS!!
I have nostrils that are opened!!!! Today I thought "Hmmmm I am gonna try bigger tubing in my right nostril." I've been using the tubes since yesterday and could tell the tubing in the right nostril was LOOSE. I thought "Hmmmmm Let me switch out tubing." I have some spare tubing here at the house. So I switched out tubing... I went from a 12 FR to a 16 FR in my right nostril. So now I have 16 FR tubing in both nostrils!! And both nostrils are very opened now!!
Because everything is more opened, there's a definite difference in my speech and everyone notices it.
I am TOTALLY PSYCHED!! :-) Now if I can just have a successful columella reconstruction in the next few months, I will even be more happier!! And I am pretty happy right now!!
Sat., April 25, 1998
I am excited and nervous about the next, and possibly final, round of surgery. I know the columella reconstruction will be risky. I will need lots of prayers and good thoughs for this surgery. I will definitely be eating a Totino's Party Pizza (canadian bacon, my favorite) the night before this surgery. I wonder if PS will start talking surgery at my next appt.
Sun., April 26, 1998
I found a dissolving stitch in the side of my nose. YUCK!!!!
Mon., April 27, 1998
I definitely have a dissolving stitch in the left side of my nose. Hmmmm I wonder if I should call the clinic about it?? Since I didn't call today, I will call tomorrow.
I had Mom take some pictures of me.
Tues., April 28, 1998
I am still healing.. I can tell that the stiffness around my nose is slowly going away. That will go away eventually. I still have the dissolving stitch. I need to call the clinic tomorrow to schedule next appt.
If someone would asked me 20 years ago if I would still be going thru my reconstruction now, I would have said NO WAY. It's amazing what turns life can take. I've had eight surgeries since 1987. I was reading thru my other journal.. I laughed when I read the first entry.. PS talked liked last year's surgery would be the last. Geez it's amazing how one last surgery has turned into four. :-) I am really not surprised. :-) I know there will be an end to the reconstruction and it is coming soon. Like I've said before, I will be full of mixed emotions when it is all over tho. Been thru soo many surgeries and it will be a weird feeling when it is all over. But I am gonna party when it is all over tho. :-)
I don't know who hates the nasal tubes more: Me or my parents. It's strange how they've become a part of me. It's something I can't really describe but I can try. I feel sort of naked without them. Heck I've been using them for almost two years. Someone suggested I bronze them. LOL My dad told me that I should leave them out for a few hours a day. I was like NO WAY!! Just a few more months to deal with them. I am NOT doing anything to screw up the surgery I just went thru. NO WAY!! My mom complains about the odor that they sometimes give off. Nothing I can do about that. :: SIGH ::
I don't think that anyone has a clue to what sacrifice I am taking.. I haven't worked since Dec. 1996. I decided after I got "laid off" that I would finish up my reconstruction.. I knew I had more surgery coming up. Why not get it done before I get back into another job? I want to work because I would love to have the money to pay off my bills. As soon as the next round is done and I am well on the road to recovery, I am looking for employment.
I put some postop pictures up... I wasn't too sure about putting the pictures up on my Arhinia Page. I don't like people to see me at my worst. But I did it and am glad that I did.
Mon., May 11, 1998
I tried to call Deloris at the clinic today.. I got the voice mail. I did the next best thing.. I sent an email to Deloris. LOL She replied this evening and told me that she would email me a time on Mon., May 18th to see PS.
Tues., May 12, 1998
Deloris emailed me tonight. I see PS at 2:45 PM on Monday. She also has a project for me. :-) PS and I need to talk about who is going to host his website.
I am ready to go onto the next round of surgery. I wonder if PS will say anything. I think that I will bring it up. It will be nearly six weeks since my surgery.
Mon., May 18, 1998
Today is the day I find out what's going to happen next...
Brenda called me at 10:50 AM and asked me if I could come in 45 mins. earlier and I was like "YES!" I hurriedly got ready and left the house at 11:35 AM so I could catch the bus. I got off downtown so I could take care of some banking business. Then I headed on to St. Luke's for my appt.
I made it to my appt. on time. PS told me that he will do the work on my columella in the fall. He will also have to do some minor revision on the right side of my nose because it has pulled up a bit. Instead of having surgery in the next three months, it will be in the next six months. It's good to have a six-month break between surgeries. But the waiting can be frustrating too. More news: When I go back to see PS in three months, I will start weaning off the nasal tubes. I am really psyched about that. :-) He wants me weaned before surgery. I am not really surprised by the wait.. I remember PS telling me six months ago (on Nov. 24th) that he wanted to wait a year before he did the work on my columella. I rather PS wait than to rush into things. I don't go back until Aug. 25th.
Next discussion: Website business. LOL LOL I am building a craniofacial anomalies site for him. It will have a little bit of everything. I am going to check out website hosting. (Thanks to my friend, Casey, I might have found a potential web hosting service.) I need to help decide on a domain name. My choice: http://www.cleft-cranio.com/ Gisela chose http://www.newface.com/ (I kind of like that but it is taken.) Please do it no later than June 1st. I will give you credit for it on the website if your suggestion is used. PS suggested http://www.cleftkids.com/ I told PS no because the site would be more than just about kids. Besides it is more than just about cleft lip and/or palate. (I just love giving my opinion.
My PS told me that he is bringing a partner in on June 1st. His partner will do hand and breast reconstruction because my PS wants to concentrate more on cleft and craniofacial reconstruction.
Going home from the appt., I thought about the next six months ahead of me.. It's a long time. I am thinking about just getting some part time job.. Nothing too taxing and something I don't feel bad about taking time off from when I have surgery. I even thought about temp work. I could use the money. Besides I need to get out more. :-)
When I got home, my mom and I talked some more. (I had called her from my cell phone on the way home.) She is right.. She agrees that it is good for PS to wait. We both know that he does not rush into things.
My goal at my August appt. is to have a surgery date because I want to get on with my life.
Wed., May 20, 1998
Two years ago today I had surgery to open up my nostrils. And two years ago I started using nasal tubes again. I remember PS telling me that I would be using nasal tubes for two years. He was right. By the time the wean starts I will have been using them for over two years. I've had some breaks from them:
1. In August 1996 - I lost a set of tubes on vacation. My mom, her youngest brother and his girlfriend, and I were on a boat to Catalina Island. I was videotaping by the railing. Guess what?? My tubes fell out. LOL They fell in the ocean and never to be seen again. There was nothing we could do that day since we were on Catalina Island. The next day we got up and called my sister-in-law who called my PS' office. PS' office called us and told us that they were FedEx'ing a new pair to where my mom's brother worked. The following evening I got my tubing. The tubing went into my nostrils quite easily.
2. In September/October 1997 - I went without the tubes for six weeks but then my nostrils started closing up. The tubes went back in.
3. In April 1998 - I went two weeks without the tubes after surgery.. PS gave the nostrils some time to heal.
So you can see I've only gone eight to nine weeks without the tubes. The rest of the time the tubes have been in my nose 24 hours a day/7 days a week. I do take the tubes out to clean them.
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