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Hey everyone,

surgery went great and he is home but we are having a little trouble.

He is bleeding more then he should be. I called the dr and they said to get

some Afrin nose spray. he said that should help close up the the vessels. one

spray in nostril and then 30 mins spray again and if still bleeding in an

hour and a half. If he is still bleeding then we have to do something. the

good news is that he is feeling good. hopefully we can get the bleeding under

control.

i will keep you all informed bye for now.

shelly

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,

Yes roberts bleeding stopped shortly after. For the rest of the night is was

just and ooze like it should have been. he is doing well today. He is

actually building a Rocket with his dad right now. He feels real good. I have

to keep reminding him not to bend forward and not to horse play. he started

playing with last night and bumped his nose with his foot. the

easy part is over, his surgery the hard part is keeping him settled down

until he heals.

I got real mad last night. One girl called for robert and asked him to go to

another girls house that lives here in the park. Of course i told him no not

just because of his surgery but because the girls little sister is the one

that use to call and upset all the time. One of the big reasons is

cause the little sister had head lice a week ago and has had it most of the

yr and i refuse to let my kids near there. she has already given 2 other

families in the park head lice. Anyway the girl called back right after

robert hung up with her and i answered the phone and i told her that robert

had surgery that day and there was no way he was going outside much less to

the other girls house and to tell the other girl to stop having her friends

call my house. That family has caused me nothing more then major headaches

and worry over jesse. The mom is just now wanting to work things out after a

yr of her youngest girl harrassing jesse and upsetting him, not to mention

calling here at 11,12 and 1 in the morning wanting to talk to jesse. we

blocked her number and then she was at someone else's house and took our

computer line number off their caller id. She would call and if jason or i

answered she would hang up and talk if jesse answered. You see we don't allow

the kids to give out this number but they do use to call out sometimes.

anyway we have done everything except call the police about it. The girl has

been told by everyone and its almost useless to talk to the mother, but now

the school is involved with the girl and they have trouble with her at school

as well and they have told the mother about it and now mom wants to do

something about it. The school finally did something cause i told them i

would not let jesse go back to school cause its to stressful with the girl in

his class. Not only does he deal with it at school but he has to deal with it

at home too. he gets no break from this girl. told me the other day.

their mom wants me to call her but i said right now i don't have the time

with his surgery and all. It will have to wait until next week and i still am

not going to allow my kids to their house or the little girl around jesse no

matter what she says. is friends with the 2 older girls but they will

have to be friends out side not in my house or their house due to the head

lice. If jesse gets it, it will take forever to get rid of it and it makes

him so sick. my kids had head lice about 3 yrs ago and it took 6 months to

get it off jesse and thats after i shaved their heads. I can't risk jesse

getting it again.

ok sorry for the venting, guess i needed to though. thanks for listening.

shelly

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I'm happy to hear that 's surgery went well, . I hope the

bleeding stopped soon after you wrote your note to us.

----- Original Message -----

From: <12341234@...>

< >

Sent: Tuesday, April 17, 2001 4:20 PM

Subject: Re: [ ] Surgery

> Hey everyone,

>

> surgery went great and he is home but we are having a little

trouble.

> He is bleeding more then he should be. I called the dr and they said to

get

> some Afrin nose spray. he said that should help close up the the vessels.

one

> spray in nostril and then 30 mins spray again and if still bleeding in an

> hour and a half. If he is still bleeding then we have to do something. the

> good news is that he is feeling good. hopefully we can get the bleeding

under

> control.

>

> i will keep you all informed bye for now.

> shelly

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It's fine to vent whenever you need to, . You have every reason. Sorry

about this ongoing problem with that other family. I can't believe the

mother would allow the phone calls and harassment to continue. And, yes, the

last thing you need right now is lice!

Good luck! I hope that continues to recover without further incident.

----- Original Message -----

From: <12341234@...>

< >

Sent: Wednesday, April 18, 2001 10:04 AM

Subject: Re: [ ] Surgery

> ,

>

> Yes roberts bleeding stopped shortly after. For the rest of the night is

was

> just and ooze like it should have been. he is doing well today. He is

> actually building a Rocket with his dad right now. He feels real good. I

have

> to keep reminding him not to bend forward and not to horse play. he

started

> playing with last night and bumped his nose with his foot. the

> easy part is over, his surgery the hard part is keeping him settled down

> until he heals.

>

> I got real mad last night. One girl called for robert and asked him to go

to

> another girls house that lives here in the park. Of course i told him no

not

> just because of his surgery but because the girls little sister is the

one

> that use to call and upset all the time. One of the big reasons is

> cause the little sister had head lice a week ago and has had it most of

the

> yr and i refuse to let my kids near there. she has already given 2 other

> families in the park head lice. Anyway the girl called back right after

> robert hung up with her and i answered the phone and i told her that

robert

> had surgery that day and there was no way he was going outside much less

to

> the other girls house and to tell the other girl to stop having her

friends

> call my house. That family has caused me nothing more then major headaches

> and worry over jesse. The mom is just now wanting to work things out after

a

> yr of her youngest girl harrassing jesse and upsetting him, not to mention

> calling here at 11,12 and 1 in the morning wanting to talk to jesse. we

> blocked her number and then she was at someone else's house and took our

> computer line number off their caller id. She would call and if jason or i

> answered she would hang up and talk if jesse answered. You see we don't

allow

> the kids to give out this number but they do use to call out sometimes.

> anyway we have done everything except call the police about it. The girl

has

> been told by everyone and its almost useless to talk to the mother, but

now

> the school is involved with the girl and they have trouble with her at

school

> as well and they have told the mother about it and now mom wants to do

> something about it. The school finally did something cause i told them i

> would not let jesse go back to school cause its to stressful with the girl

in

> his class. Not only does he deal with it at school but he has to deal with

it

> at home too. he gets no break from this girl. told me the other

day.

> their mom wants me to call her but i said right now i don't have the time

> with his surgery and all. It will have to wait until next week and i still

am

> not going to allow my kids to their house or the little girl around jesse

no

> matter what she says. is friends with the 2 older girls but they

will

> have to be friends out side not in my house or their house due to the head

> lice. If jesse gets it, it will take forever to get rid of it and it makes

> him so sick. my kids had head lice about 3 yrs ago and it took 6 months to

> get it off jesse and thats after i shaved their heads. I can't risk jesse

> getting it again.

>

>

> ok sorry for the venting, guess i needed to though. thanks for listening.

> shelly

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,

Your situation sounds dreadful. Being held together with just skin and a binder

must really be scary. I’m sorry the doctor postponed your surgery for the next

step, but maybe it is for the best. To go through such a long hard surgery and

then to risk loosing it all to an infection would be even more dreadful. I hope

the Remicade helps your pain. I can’t believe in your situation, your doctors

are stingy with pain meds.

Yes, before I had my knees replaced, I heard my knees crunching all the time.

I could also feel them grinding, and soon the grinding caused severe pain. One

day my knee just locked, and I had no choice but to get it replaced. I hope the

remicade stops the damage in your knees before it gets to that point.

Hugs,

a

-----Original Message-----

From: [mailto:dat2352@...]

Sent: Tuesday, May 01, 2001 4:07 PM

Subject: [ ] surgery

I am kind of an unhappy camper at the moment! Had appointment with my general

surgeon yesterday. She took out a few sutures and said my incision is healing

well-that is what there is of it- just skin. Today went to the plastic surgeon.

He wants a CT scan to see what if any muscle and abdominal wall is there to work

with. He is concerned that there could be undetectable bacteria hiding in me so

want it totally healed for awhile before next procedure. In the meantime I am

being held together by skin, the binder and a prayer! The RA is dreadful. The

nights are awful. I am taking vicodin which takes the edge off in the day but

not at night. I use a walker to get to the bathroom at night. I have a

remicade infusion on Thursday-I'm hoping for some relief. I want my life back.

I have lost 33 lbs. over the last few months which is good from every angel but

doesn't seem to be helping the arthritis but is good for surgery. Have x-rays

of knees tomorrow to access further damage. I hear my knees now, do any of you?

Someone awhile ago asked about the difference in pain between RA and FM. I've

been thinking about that lately. I do not have a FM diagnosis but when I hold

still., it is mainly he muscles that hurt so what does it matter, it's all

terrible!

Temple

Kuddle Kritters Farm

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/kuddlekraft/index.html

http://www.homestead.com/kuddlekrittersdairygoats/index.html

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a,

Yes, it is scary. I of course forgot to as my general surgeon some key

questions on Monday, so will call her today. Like what happens when I use

the muscles that aren't there like sitting up from laying down.

The remicade has helped in the past-not totally but at least I don't sleep

all the time like now. I don't know if the fact that I am so bad now is a

function of being at the end of a cycle or from the infections.

My mother has osteoarthritis and is really scared of a knee replacement

because she has heard horror stories. Maybe I could give her a good one.

Temple

Kuddle Kritters Farm

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/kuddlekraft/index.html

http://www.homestead.com/kuddlekrittersdairygoats/index.html

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HI Everyone...just letting you know I am scheduled for surgery on MOn 14th

for abd wall cyst removal...they will be keeping me over night ...and not

using same incision site....and no staples......stitches this time. I feel

pretty good today..and am waiting to hear if they are going to put me back on

ABs as I ran out Tues night....there still is no infection so let's hope it

stays that way......I am very tired today and now going back to bed......T

alk more later ..Judy in AZ

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thank god it'll finally be over with then. get rid of it once and for all!!

sorry it had to come to that judy.

kathy

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Sorry that surgery is upon you once again, Judy. Let's hope that it takes

care of your problem once and for all! The length of time that this has been

going on is unbelievable. I think that you, Debs, Me Mom , and

are all in some sort of terrible competition. I declare that you are all

winners and that the contest is now officially over - PLEASE!

----- Original Message -----

From: <JHend65291@...>

< >

Sent: Thursday, May 10, 2001 12:08 PM

Subject: Re: [ ] surgery

> HI Everyone...just letting you know I am scheduled for surgery on MOn

14th

> for abd wall cyst removal...they will be keeping me over night ...and not

> using same incision site....and no staples......stitches this time. I

feel

> pretty good today..and am waiting to hear if they are going to put me back

on

> ABs as I ran out Tues night....there still is no infection so let's hope

it

> stays that way......I am very tired today and now going back to bed......T

> alk more later ..Judy in AZ

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, HI thank you for your email. The bag (aka my tail) is my drain

bag. I originally had an abd hernia repair done on 3/5/01. I had to have a

9x12 inch mesh put in as I had a huge hernia on lower rt side(6x8in) and then

2 small ones on lower lt side. When you move something that big around you

get a space that the body compensates for by filling with fluid.....so dr

puts in drain to get this liquid off .they usually remove it w/i a few days

to week...Mine was putting out over 100 ccs/12hrs at 2 weeks but my dr wanted

to pull it and hope my body would reabsorb this fluid..(most NORMAL people's

bodies do this....I started running fevers a few days later and felt like flu

and/or worse case of RA ever....DR sent me for CT scan and found fluid had

travelled in my abd to upper rt side of abd...so they " tapped " me and put in

drain which happens to have about 18 inches of tubing and a drain bag about

5x9 in with an accordian style pump on top ...cant hide it well....so in

these past few weeks I have had it taken out 2x as we found temporary ways

to slow the output and thought it was shrinking....it is not ...in fact it

has now got its own walls and is making its own fluid from the inside

....hence ..it is a cyst ..about the size and shape of one of those huge

hershey kiss candies for holidays...so MOnday they will operate to remove it.

I am tired of the tail as I cant shower or bathe in tub with it...and once

they remove this I will be getting a JP drain which is smaller and hopefully

I will heal right this time.......Sorry if I rattle on here ...this has

literally become my life now and I tend to get to really feeling sorry for

myself.I think I am just tired of the whole mess....this group has been very

supportive and I appreciate everyone being here....Judy in az

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please judy!!! you hold me up every day!!! you have every right to be angry

and frustrated with this whole thing. hopefully it will all be over for you

kathy

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Judy,

You sound like me with the hernias. I have had 7 surgeries to ? repair it.

Next one is plastic surgery to do a muscle flap. Just came home from a CT

scan to see if there is any muscle and abdominal wall left at all-NOT! Now

I am temporarily being held together by skin and a binder. I had a bag last

year but only for a few weeks. An abscess ruptured. Gross looking stuff,

huh? My problem is the repairs keep getting infected and the surgeon

doesn't want me on any RA drugs that will compromise my immune system-well

that's just about anything. Anyway I've tried just about everything and

nothing works anyway. So I hobble around in agony!

Temple

Kuddle Kritters Farm

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/kuddlekraft/index.html

http://www.homestead.com/kuddlekrittersdairygoats/index.html

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,

Hi, my son (now 6) had his tonsils and adenoids out (and ear tubes put in)

at 3 1/2. You are right, it doesn't immediately help with apraxia, but it helps

with breathing and congestion and snoring. They also have a better chance of

producing the correct sounds if they can breathe correctly! Anyone is more

intelligible if they don't sound congested.

Unfortunately, 's adenoids grew back and he had them removed again (right

before his 6th birthday). I wasn't aware that they could grow back, but his

ENT said that the first surgeon must not have scraped all of the tissue out.

has a very high pallet (sp?) so that might have been the problem.

The recovery time wasn't too bad with just the adenoids. Just a little nausea

from the anesthesia which goes away after a few hours, and a soar throat for a

few days.

Good Luck!

Liz Dunn\Ridgewood NJ -6, Wesley-4

catherine gillen wrote:

> My daughter, Gwen, has been diagnosed with developmental motor apraxia. When

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Dear ,

Hi! I could hardly believe your post about your

child having adenoids out! My son Micah was the exact same age when

he had his out!!!!!!! I was SUCH nervous wreck about him going under

and having this surgery than the ENT doctor, who also treated my

husband's chronic ear and sinus problems for years before, teased me,

saying " Well, you're all concerned when your son has surgery but when

your husband comes in for surgery it is no big deal! " ha ha My son

had both his adenoids and tonsils out at the same time, mainly because

of their size, not because of constant infections. The dr. warned me

that his speech might actually regress for a month or two until he was

completely healed and back to normal. I am not sure it ever helped

his speech but that was not why we did it. Our primary reason was to

help him not keep waking up at night. We moved several months later

and after we settled in he began sleeping beautifully! He continues,

two years later to sleep through the night consistently except if he

needs to go to the bathroom, which isn't often. I am so grateful I

gathered my courage and allowed the surgery to be done.....it has

really helped him rest better at night. He had no complications at

all from the surgery, although of course it was very painful and he

did vomit some in reaction to the pain medication and lost a little

weight from not eating for several days. I was allowed to go with him

into the operating room and hold him while they put the mask on him

and he went under....it was tough to then lay him on the table and my

legs honestly felt like jello as I walked back to the waiting room!

Then we were right there the whole time in the recovery room and they

allowed him to come home that afternoon rather than stay over night in

the hospital. It was tough but I am glad we did it, looking back.

May God be with you as you make the decision, Carol

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Thank you for responding to my concerns about my 3 1/2 year old daughter's

adenoid surgery. It is nice to know there are other families out there that

have similar issues as ours. Should I tell Gwen about the surgery? I haven't

as of yet, she seems to like going to the doctors and has started asking to see

one every time she bumps an elbow! But I 'm afraid this may scare her, but if

she knows will she worry asbout it or is she too young???? What did you do? My

ENT is letting me go in the room for the beginning as well and they won't put in

the IV until she is under. She does not have low upper muscle tone, although

she does have sensory issues. Her surgery is currently scheduled for the 26th

and I'm sure I will be a wreck until it is over!!!!

Thanks again for caring

Find the best deals on the web at AltaVista Shopping!

http://www.shopping.altavista.com

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> Thank you for responding to my concerns about my 3 1/2 year old daughter's

adenoid surgery. It is nice to know there are other families out there that

have similar issues as ours. Should I tell Gwen about the surgery?

,

yes, you should. I can tell you for I have some experience, unfortunatley my

daughter Alison has had 7 operations (cancer and kidney malformation) form

birth since she was 2 and a half. Even when she was only one, docs adviced

me to tell her. She KNEW by herself anyway. When she came back home after 6

operations and chemo, she was 18 months. We did not mention operations and

all that any more, waiting for her to ask for an explanation. At age two she

" told " me (her speech was very poor, only I could understand her) in tears

that HER tummy had been cut (I was telling her the story of Little Red

Riding Hood). I cuddled her and said, yes, you had a ball in your tummy that

needed to be taken off, so by then she knows that explanation, even plays

with dolls who have a ball in their tummy and have it off thanks to surgery.

What I mean is: a child knows MUCH more than he can say, and if you do not

give her an explanation, Gwen will build up one of her own (Alison thought

for years, in spite of my words, that she had been punished for beeing a bad

child, for, she said, only bad people should suffer, but she had cancer and

that is very different. She has been in psychotherapy and now is OK).

Your daughter is old enough to understand a SIMPLE explanation. Make it

simple, talk to her in a relaxed way, do not give her any message of fear,

make it plain you will be there all the time, but explain her what she will

have to expect (new place, docs with mask, going to sleep, having a bit of

pain, etc). Tell her it is necessary, but wont'be too painful. Buy a little

present for her, to give her when she enters in the hospital. Bring her

favourite toys/dolls. Do not tell her too much in advance, in order not to

create anxiety. You may tell her the day before, do not give long

explanation, just stick to the essential and show her you are calm and

loving as ever.

Sorry for the lenght, hope it helps, a lot of hugs

Simonetta, mum of Alison, Kabuki Syndrome, 7yo

Milan, Italy

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Hi ,

My son hasn't had surgery yet, but a friend of mine has a 4-year-old with

goldenhar syndrome - half of his face didn't form right in the womb and he

needs many surgeries to correct it. just had an eye surgery a few

weeks ago. I can tell you what worked for her. She took him to meet all of

his doctors and get him used to the " scrubs " they wear and the masks and

gloves so he wouldn't be afraid of them. She also didn't tell him about the

surgery until a few days before. Also, she got him a Ken doll and bought

" scrubs " for the Ken doll for to play with (you know, the green shirt

and pants that they wear). She spoke about the surgery very

matter-of-factly, like kids go thru this all the time. went thru the

whole thing very calm and relaxed. I hope this helps you!

----- Original Message -----

From: " catherine gillen " <cathcaingwen@...>

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,

Yes, I've had it done, twice. The top was a piece of cake, went so smooth.

Dentist couldn't believe how good I looked the next day when I went back. The

bottom was h*ll. I got so sick. Went to a different dentist and don't know if

it was him or I had more teeth on the bottom or what. He also gave me some pain

pills that made me sick to my stomach. I was awake both times, just lots of

novcaine (sp). Both times I missed 3 days of work. Like you I now have two

beautiful set of teeth and it's been worth every bit of the pain.

I know you don't like to take pain pills, but do yourself a favor and take them,

trust me you will need them. Hope you heal fast. Smile pretty for us. Tery

cwade@... wrote:

>Hi all-

>

>Just got home from major dental surgery (8 regular extractions and 5

>surgical). Fortunately it was doen in a hospital and I was under. My

>face is swelled up like a balloon, but I now have a full set of

>beautiful teeth.

>

>I was given some (8 pills) of Meperidine/Promethazine for pain, and I

>am getting a little sleepy. I have gone into a flare. I am assuming

>that the surgery is the cause. Has anyone else experienced this kind

>of thing?

>

>Well, I need to change the gauze and get to bed before I pass out in

>this chair here. Will check back later.

>

>Chri

>

>

>

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Good to hear that all went well. Enjoy the pain medication, get some rest &

post when you are up to it. It will probably be several days, but we will be

here.

My kids would jump for joy if I had that surgery, not being able to talk and

all. They would probably do a dance hoping to make it permanent!!!!!!

Take care and be well, my friend.

Sending warm, smooth comforting foods to help you thru this time.

Love,

Debs

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,

I hope you heal quickly so you can enjoy your beautiful

smile :)

I've never had anything like this done, so I can't offer any

advise.

I just wanted to wish you a quick recovery.

a

[ ] Surgery

Hi all-

Just got home from major dental surgery (8 regular

extractions and 5

surgical). Fortunately it was doen in a hospital and I

was under. My

face is swelled up like a balloon, but I now have a full

set of

beautiful teeth.

I was given some (8 pills) of Meperidine/Promethazine for

pain, and I

am getting a little sleepy. I have gone into a flare. I

am assuming

that the surgery is the cause. Has anyone else

experienced this kind

of thing?

Well, I need to change the gauze and get to bed before I

pass out in

this chair here. Will check back later.

Chri

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Good luck in your recovery, ! I haven't been through anything like

that, but rest and take your meds. I hope you feel better very soon.

[ ] Surgery

> Hi all-

>

> Just got home from major dental surgery (8 regular extractions and 5

> surgical). Fortunately it was doen in a hospital and I was under. My

> face is swelled up like a balloon, but I now have a full set of

> beautiful teeth.

>

> I was given some (8 pills) of Meperidine/Promethazine for pain, and I

> am getting a little sleepy. I have gone into a flare. I am assuming

> that the surgery is the cause. Has anyone else experienced this kind

> of thing?

>

> Well, I need to change the gauze and get to bed before I pass out in

> this chair here. Will check back later.

>

> Chri

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Hang in there ,

Shortly those swollen cheeks and blurry eyes will give way to those beautiful

pearly white teeth, which you will enjoy. Just keep those pain meds handy,

that is what they are made for. They don't give out any awards for being a

hero in pain! Don't worry about posting until you are up to it, we will be

keeping you in our thoughts and prayers.

Gentle, tender, healing, angel hugs,

Deb

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Thanks Tery

I can't read the rest of the posts. The pain meds blur my vision. I

can barely make out the keys on the keypad. I can't focas. Going to

tray another time. I am in major pain as the had to cut away some of

the bone. I cannot get the bottom teeth out to gargke with salt

water. Too swollen. I can't tell if I am hitting the right keys ot

not. Must get to bed now. My face looks like I got hit with a base

ball bat, but my teerth are beautiful.

>

> >Hi all-

> >

> >Just got home from major dental surgery (8 regular extractions and

5

> >surgical). Fortunately it was doen in a hospital and I was under.

My

> >face is swelled up like a balloon, but I now have a full set of

> >beautiful teeth.

> >

> >I was given some (8 pills) of Meperidine/Promethazine for pain, and

I

> >am getting a little sleepy. I have gone into a flare. I am

assuming

> >that the surgery is the cause. Has anyone else experienced this

kind

> >of thing?

> >

> >Well, I need to change the gauze and get to bed before I pass out

in

> >this chair here. Will check back later.

> >

> >Chri

> >

> >

> >

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Thanks a-

I am not doing to great. The pain is incredible and I can't see,

everything is blurry. I can barely make out the keys on my keypad.

Best get some rest. Gotta go back to work tomorrow.

CW

> ,

> I hope you heal quickly so you can enjoy your beautiful

> smile :)

> I've never had anything like this done, so I can't offer any

> advise.

> I just wanted to wish you a quick recovery.

> a

>

> [ ] Surgery

>

>

> Hi all-

>

> Just got home from major dental surgery (8 regular

> extractions and 5

> surgical). Fortunately it was doen in a hospital and I

> was under. My

> face is swelled up like a balloon, but I now have a full

> set of

> beautiful teeth.

>

> I was given some (8 pills) of Meperidine/Promethazine for

> pain, and I

> am getting a little sleepy. I have gone into a flare. I

> am assuming

> that the surgery is the cause. Has anyone else

> experienced this kind

> of thing?

>

> Well, I need to change the gauze and get to bed before I

> pass out in

> this chair here. Will check back later.

>

> Chri

>

>

>

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,

I have to agree with a, perhaps a call to the dentist is in order and not

going back to work.

Please keep us posted if you are able.

Gentle, tender, feel better soon angel hugs,

Deb

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