My Email Diary
This is a collection of the emails I wrote home to my school, friends, etc. I thought some of you who have ALREADY gone through the procedure might enjoy reading them, since I'm sure you can relate!
Thu, 12 Apr 2001 20:44:35 -0700
Dear all the people that got me these nice presents:
Thank you very much for caring so much about me, even though I don't know all of you. It was really nice and very generous of you guys to do this. Thanks for all the stuff and the money, as well as all the stuff to do (can you tell I like the word 'stuff' yet?). Anyway, thank you again!
Mon, 30 Apr 2001 11:25:33 -0700
Hi everybody! Sorry it's been so long, but I had a nice long letter all typed up, and it got deleted! Anyway, I'm still alive, just so you know. We're in the Ronald McDonald House now. I spent 4 nights in ICU (intensive care unit), and the last night on the regular pediatric floor. Did you know that hospital pureed spaghetti tastes exactly like hospital pureed beef, and meatloaf? Well it does. I did get a hospital menu, but there's only so much you can eat when you're not allowed to chew.
I have the option of always feeling sorry for myself, but it's kinda hard to do that here. I'm one of the most minor cases in the Ronald McDonald house! I mean, back at home, me being like, one of the only kids with a `defect", it seemed like a totally big deal, as if I were really un lucky, well, come down here, and you'll feel SOOOO blessed! Here are some of the kids I've met (no one near my age L )
~~~In this email I described some of the Ronald McDonald House occupants and their medical needs. I deleted this section for their privacy~~~
There are soooo many examples, so here I feel very fortunate.
So far I've seen these movies:
Patch Adams ****
Runaway Bride ***
Mrs. Doubtfire ****
I'm going to see Beautiful while my parents go on a date this afternoon. My uncle is here too.
I've veiwed these magazines: Brio ****
Girls' Life ***
Marie Clair 0
A teen mag. I can't remember *
I haven't read any novels yet, `cause I get dizzy when I read too much, since my eyes don't focus too well yet.
I don't think I look that different., but my uncle said that when he 1st saw me he thought I looked different. I'll wait and see what you guys think.
I still have most of my hair, but I had to wait a WHOLE week to wash my hair! And I had this awful-smelling solution in it at the time to hold my hair back during the operation. I'd be lying if I said recovery was totally painless. It wasn't COMPLETE torture, but it was still worse than The Crystal Cave tests!
Now I'm doing okay, the swelling has gone down, and I'm more energized. It's pretty hard to sleep, since they want me to sleep on my back, but I've got 2 Stainless steel `antennas' (my dad says that's what they look like) sticking out the back of my head! Oh well. In general, I'm doing fine. Especially since I have an internal device instead of an external (all except the 2 cables)
The people I am sending this email to are: Jill, Annelise, Caroline, Carly, Katie , Ellen (thanks for the cute cat program!), Amy, Amy, and `the teachers'. . I can add anyone else who emails me to my next message.
Talk to ya later!
Mon, 07 May 2001 17:33:47 -0700
Hello again everybody. In case you didn't know, I had surgery again on Wednesday, and will probably have a major surgery on Thursday. This wasn't planned, but we've been preparing ourselves during the weekend (emotionally, that is), since we weren't seeing any results, so it wasn't a big surprise when the doctor said I'd need the RED system put on. This internal system isn't working for me. All my teachers have a picture of the RED device on a little boy. RED stands for Rigid External Distractor (if you don't understand, that's okay, I already know what's going on).
It must be the week of my life, after all, not many people get to have 3 surgeries in 3 weeks. It looks like I may be here for a while longer.
If I want to be REALLY optimistic, I can look at the other kids here. I know I talk a lot about them, but hey, you don't get to be in a place where your problems are crumbs on the floor compared to other kids!
Okay, I've heard that Mr. Creighton reads these things out loud, word-for-word, so to save your orchestra practice, I'll quit talking for you. If you're thinking of me on Thursday, I want you to know that the surgery is not as major as the first one I went through, and I'll only be in the hospital for 3 days instead of 5 like last time, and NO VENTILATOR! Yippee!
Okay, I better go! I guess I'll see `ya later!
Mon, 07 May 2001 17:40:24 -0700
Hi guys. I know you probably got my other long email, but all the teachers get that 'newsletter', and I've heard that some of them read them out loud. So as you know, I'm having surgery sometime this week. Could you guys include me in your prayers? I'd really like that, and I'd like to thank you guys that have been praying for me. I miss you all and hope to go home soon. Love 'ya
Tue, 08 May 2001 18:11:30 -0700
Okay everybody, it's me again. Since my surgery was un-planned, they had to find a time slot for me to have surgery (if they wait too long, the bone-cuts will heal back again). They originally wanted to find a time slot for Wed. or Thurs., but Wed. was all filled up, so they told us "probably Thursday," but that was filled up too, and of course, they want to do it ASAP, so they moved a Wed. patient to a different day (I geuss).
So bottom line: My surgery's tomorrow. Just wanted to let you know.
I hope that Mrs. Wick's 2 Minutes of thoughts and vibes help tomorrow.
Thank you to all the people that have added me to thier prayers (they've helped ALOT).
I hope that everything is going well up there, and that you all will be there when I get back (that is, that you won't suffer 'death by homework')
Mon, 21 May 2001 11:56:00 -0700
Sorry I haven't emailed in a while but the big surgery was Wednesday the 9th.
This last surgery was successful and so I'm relieved, especially since I could have given up and come home after the 2nd surgery. I look a lot different now. I cannot see myself well yet because of this RED device (which means Rigid External Distractor, aka Really Evil Device) on my head. However, my parents and the surgeons like the results very much.
They told me they were 90% sure that I wouldn't have the breathing tubes in when I woke up for this last surgery, well guess what? I woke up and there they were! They left them in the WHOLE NIGHT! I don't think that anyone who's never had to have breathing tubes could possibly know of the awful torture they cause. It feels like your suffocating and you're going to die! As you can imagine, I didn't sleep too well that night.
I guess I was a pretty pathetic sight (I certainly felt pathetic). I had an IV tube, an oxygen monitor, these sticky thingys all over my body, breathing tubes down my throat, a cage on my head (RED), blood oozing out of my nose, swelling, things beeping and buzzing, nurses going in and out of my room and I'm laying there moanin' and groanin'. Now all you need is some real dramatic music and a couple of fancy pieces of furniture and you've got a hit scene for a soap opera.
I know everyone seems to think that I'm optimistic, and I am trying to be, but the truth is, life after surgery in the hospital, it's not that glamorous. You've probably seen the scenes on those dumb soaps where every other scene someone's in the hospital in a coma or having surgery or what ever. They usually have real big fancy rooms, gourmet food, big windows, furniture, and room service (compliments of the `hot' nurses). If you've ever been in the hospital, you'll know that that just isn't the truth.
Imagine sleeping to the beautiful tones of your heart, blood, and oxygen monitor, alongside your beeping IV alarm. You rest peacefully as the nurse walks in ever so loudly and yells in your ear: "I'm just going to take your vital signs! I'll put this cuff around your arm that's gonna sweeze it `til it nearly falls off, then I'm going to take a cold sharp thermometer and shove it under your arm. After that I'll just take this ice-cold stethescope and listen to your chest for an hour or so: but don't mind me, just go on sleeping honey!" Yep, that's hospital life! At least I'm out now, and I can joke about it all I want-until I have to go back there, that is.
You kind of figure out where your life is when an exciting part of your day is getting up to go to the bathroom, which is approximately 10 feet away from your bed. Eating is hard, cause I'm not allowed to chew, I can't suck through a straw, and I can't shut my mouth all the way either (because of this RED device). My diet consists of Ensure, cream of ________, Ensure, pureed ____________________, Ensure, mashed potatoes, water, more Ensure, and that's about all. If it's not pureed, it's probably liquid (which I have to take through a syrenge or sports bottle, because I can't drink from a cup. Hopefully I won't loose too much weight.
Napua, a 6-year-old girl with a severe case of Pfieffer's syndrome (I'm a minor case) had her surgery on Wednesday the 16th. She's still in the hospital. We're all worried about her because she is so young and she may not be able to adapt quickly to the RED on her head.
I have to tell you guys that this RED is soooo annoying! And my whole
head ALWAYS hurts! The pain is getting BETTER, but still not GREAT. The worst part is that it doesn't go away! AAAARRRRRRGGGGGHHH! Also- The kid in the picture that all the teachers SHOULD have has RED-I, I have RED-II, which is bigger and chunkier, with a bar that conveniently runs right in front of my eyes.
Okay, I've complained enough (and it felt good to camplain too!). Now I'll tell you that I received all 1,405,672 cards and stationary sent by all of you. Thanks to Mrs. Holloway for pulling many of the notes from school together for mailing. Thank you, it only took about 3 hours to read (but it was fun!). Thank you guys very much for taking the time to think about me. I also got all those cards from Sunday school and Mrs. Wicks' hour of good vibes and the giant poster card from orchestra. Also, thanks to all my neighbors, relatives, and family for the the many gifts and cards and emails. Thank you everyone!!
Please DO NOT SEND ANY MORE STUFF BECAUSE I'm COMING HOME THIS THURSDAY OR FRIDAY (we hope)!!!!!!!!!!!!!!!!!!!!!!!!!! (only to go back on June 11 & 12 for a final outpatient surgery to remove the RED).
Even though I'm coming home, I won't be going to school, because I'll still have all this stuff on (I don't know that I'll be at church either). But just so you know, I'll be in town, not down here.
I seriously would have started school work a while ago, but I haven't really had a chance to recover. I had 1 surgery, had 2 weeks, had another surgery, had 1 week, had another surgery, and it's been 1 week and 5 days. I've watched quite a few movies since.
VG= very good G=good, O=okay B=bad VB=very bad
Beautiful=O Chicken Run=VG Miss Congeniality=VG(funny)
George of the Jungle=G Big=G The Sandelot=B
See No Evil, Hear No Evil=G Look Who's Talking Now=G
Tom and Huck=V(B) Rip Girls=O/B City Slickers=VB
I hope to see you guys soon! Thank you to all the people that had me in their prayers!