Conference moira::parenting_v3

    Hang in there Lyn.  
    
    Hugs, support, and a willing ear.  Hugs to AJ.
    
    Laura

    I thought I read in Notes somewhere recently that the patient is not
    obliged to put up with "a cast of thousands" of doctors-in-training. 
    If you don't feel like being on exhibit this time, by all means tell
    the surgeon and the nursing staff so.
    
    Best of luck and a speedy recovery to AJ...
    
    Leslie

    Lyn,
    
    First, we will be thinking of you and AJ...I can't imagine trying to
    cope.  But we know you will do great.
    
    You should getting him something like a Magna Doodle.  It's really a
    great thing for kids who have lots of time on their hands.  It is
    really better than a Etech-a-sketch(spelling?).  Because they can draw
    all different kinds of things,,,not just lines.  My oldest son (5) has
    had his for two years and now lately the little one (17months) is
    really getting into it.
    
    Keep you chin up!!!!!!!!!!
    
    
    Lillian

    Lyn,
    
    	As an adult who is constantly in and out of hospitals/orthopedic
    offices for various procedures and who understands (very well) the
    anxiety that you are feeling, the best advice that I can offer you is
    the best advice that has been offered me time and time again.
    
    	Take it one day at a time. 
    
    	Try not to project and predict what will happen, basically because
    you just don't know what the future will bring. AJ could beat and
    surpass everyone's predictions for a fast recovery.
    
    	As I didn't start my operations until I was an adult, I certainly
    have a different outlook from that of a child. I would think though
    that it would help to explain to AJ that he is not having surgery
    because he is bad or did something wrong. This is not his fault.
    
    	Also, you might want to explain to him that lots of little children
    go to the hospital and somehow point out that he is a lot better off
    than some others (without minimizing his discomfort). I don't know if 5
    is too young to understand being grateful for what you have and what it
    could have been like. Perhaps he could draw pictures for some of the
    other children in the hospital that are not lucky enough to go home
    quickly.
    
    	In any event, I think that this will be tougher on you than your
    son, you know what pain is and you want to protect AJ from being hurt.
    Just being with him, holding him, and letting him cry if he wants to is
    the absolute greatest gift you can give him.
    
    	My best wishes and support for *both* you and AJ,
    
    				Wendy         

    I really appreciate the support!
    
    re .2, that was MY  note, I think it was in one of the what to expect
    during L&D notes.  I seem to GIVE advise better than ADHERE to it! :-)
    
    Yes, he has a magna-doodle, it's a bit beat up, maybe it's time for a
    fresh replacement.  
    
    How about ideas for some of those hand held video like games?  Ideas
    and prices?  I don't wan't to go overboard being so close to Christmas.
    
    I'm also wondering about calling his general surgeon and ear doctor
    just so they can take a peek while he's "under".  Would that seem out
    of place? The ear doctor talked about removing his tubes, they are only
    somewhat working, but didn't want to do anesthesia just for removal. 
    His general surgeon might want to do some routine muscular and nerve
    tests on his anal opening, and hasn't seen him in about a year. And that 
    of course will be in the same general area.
    
    Lyn

As soon as I saw your note I thought of this only to see that you thought of
it yourself.  We just bought our 11 year old a Game Gear and it is one of the
most amazing things I've seen.  Game Boy is also nice but is black and white.
There is also the Lynx from Atari.

These are not cheap.  The Game Gear runs to around $150.00.  But from what I've
read that you've written about AJ, he is not the type to take forced inactivity
lightly.  If I were you, I'd splurge on something like this now and then, for 
Christmas get less costly things that are big and bright and can encourage his
need to move (a pogo stick?) when he is up and around again.

I think some of the Lego sets could be built when you're laying on your stomach,
in fact I think this is Mark's normal position when "Lego-ing".

Cheryl

    Hi,
    
    My son is scheduled for tubes next Monday morning, and at 22 months, I
    am nt sure how much if at all to prepare him!  I have read the tubes
    notes here and have most of my rational mind fears wllayed (beware that
    irrational mind *%-}  ), but I am not sure what to tell Nathan.  One of
    the recommended books?  Discussion?  He's scheduled for 9:00 surgery, 
    so will not have enough time to go too wild, what should I do?!  It
    will be at Emerson, which I hear wonderful things about their pediatric
    surgury unit...
    
    Any input would be greatly!!! appreciated!  Sorry about the no notice,
    this was sheduled due to a cancelation late last week...
    
    Adrienne
    

    I'm pretty sure this will eventually be moved to meet the other notes
    on Tubes, but in anycase:
    
    AJ was about the same age when his tubes went in.  Literally the doctor
    had them scheduled for every half hour all morning.  We were told to be
    a Umass at 8:30, he was scheduled for 9:00, and we were walking out the
    door with him before noon. He woke up sort of unhappy, but they quickly
    let me hold him, gave him some apple juice and half a popsicle, which
    he promptly threw up all over my new white jersy, (I went home in a
    paper scrub top), but as soon as he kept the juice down for a half hour
    he was outta there! We had planned on both of us being home all day
    with him, but I was in work by 1:00, and he could have almost gone to
    daycare he was great!  He did nap extra long that afternoon which
    presented some problems getting him to sleep on time that night, but he
    was great.
    
    My cousin's daughter, about the same age, recently had her tubes
    inserted in the doctor's office, for that I was truly amazed! In and
    out in an hour!
    
    Lyn

    
    Lynn,
    
    If you'd like to avoid the expensive hand held video games for right
    now, might I suggest going to Radio Shack. The usually have bins full
    of all different games. They're very cheap, like 4 or 5 dollars,
    because each one only plays one game. They also have a host of other 
    cheap electronic games. They usually have a bargin bin with assorted
    electronic games they're trying to unload. I'm sure you'd find
    something appropriate there.
    
    Best of luck (from someone, who as a child, spent enough time in Boston 
                  Childrens to pay for the windows of their new wing back
                  in the 60's)

    Lynn,
    
    I too spent much of my life between the ages of 7 and 14 in Boston
    Children's Hospital. They were then and remain one of the best
    hospitals in the world. The staff is wonderful.
    
    As for activities for a child that cannot read yet, how about those
    needlepoint kits ! My son's kindergarten class has started to have a
    craft period once a week, and he enjoys them (they also helf with fine
    motor skill development, according to the teacher....) Being so close
    to Xmas, perhaps he could make a gift for a grandparent or other
    special person.
    
    Also, I remember making those loop potholders during my stay at
    Childrens Hospital - when I was there they had a "craft person" on
    staff who had all those kind of supplies, etc, although they may have
    been for the longer term patients... 
    
    There was another note either here or in V2 about a 5 year old who was
    confined to bed, and a lot of good suggestions were in there as well ......
    
    Take care of YOURSELF too. You WILL get through it, but don't try and
    do it all at once. It's great that they now allow rooming in - they did
    not do that when I was a kid, and I'm sure it will be comforting to
    your little boy to have you there.
    
    Please let us know how your family is doing,
    
    All our positive thoughts are with you,
    
    Leeann
    

    Yes, but what did you tell him before you went in, or as you were going
    in?  Nathan's verbal skills are low, but his comprehension is very
    high, and I don't want him to be overly freaked!
    
    Thanks,
    Adrienne
    

Lyn,

Before you sepnd any money on things to entertain AJ, check out the pedi ward
at the hospital.  When I took my then 2.5 yr old in for a three day stay, I was
amazed at how many different things were available to the kids to play with.
Including a TV/VCR, leggo's up the ying yang, play dough, books, puzzles, etc.
All of these will be "new" toys to him!

One way to alleviate fears (both yours and his) is to talk with him openly and
honestly about his situation.  I find that honesty does the trick with my kids.
I don't want to hear lies from them, so I don't tell lies to them.  If it's
gonna hurt, they know it first.  Also let him know you will be there for him
every step of the way and you will take good care of him and "play nurse" for
him.

You may also be able to arrange a little "tour" of the pedit ward beforehand.
That's the one nice thing about a planned surgery - there are also books to read
(I think the Berenstain bears might have one - check your local library) to help
prepare him for what is coming up.

Best of luck to both of you - I have a feeling he will be emotionally fine - 
it's you you'll need to take care of!!!

-sandy

    I don't have any experience in this area, so takes this for
    what it's worth 8-).    I think that a videotape on the topic, if 
    it exists, would have the best impact on a 2+/- year old.   
    
    It doesn't really seem that they have alot of fears at this age 
    (except of strangers) at this age, so saying things like "There's
    nothing to be afraid of" may do more damage then good.  Try to 
    highlight the ?positive? aspects of the surgery (going to a new
    place, doctors, nurses, a new toy and maybe an ice cream afterwards,
    that type of thing)
    
    Most of all, I've noticed that my son has an innate skill at picking
    up my anxieties, so I'd try to remain as upbeat as possible about
    the whole thing.
    
    Best of luck,
    Carol                 

    Adrienne, I told him that the doctor was going to fix the boo-boo in
    his ears, not much beyond that, and he didn't have many questions or
    concerns.  For what it's worth I don't believe he has any recollection
    of the proceedure, or at least if he does it isn't traumatic.  I made
    it a point to buy him a small special stuffed animal to take the the
    Operating Room with him.  He still sleeps with it now, and it has been 
    named "prize puppy", a prize for being such a big, brave boy!
    
    For what it's worth, they preparation is a bigger deal than the actual
    surgery.  I'm not even sure he had even a single dose of Tylenol,
    little or no post-op discomfort. The anesthesia people put some kind of
    nose drops in his nose, that made him drowsy, we then held him til it
    took effect.  He was hardly aware of being taken away from us.
    
    As you can see by what I asked for in this morning's note, I'm not
    coping with this upcoming surgery well at all, simply because I'm sure
    he'll remember this one, whereas I don't think he's got any
    recollection of any previous surgeries (14+ before 16 months).
    
    

    Hi Lyn,
    
    If you want to know info on scoliosis, there is a national foundation
    for it in Watertown.
    
    National Scoliosis Foundation
    72 Mt. Auburn Street
    Watertown, MA 02172
    (617) 926-0397
    
    They will send you information geared towards parents.  I used to edit
    their newsletter and was very active in the organization.
    
    Both my sister and I had scoliosis surgery, after wearing a brace to
    control it.  It's not typical to have any surgery for it until a child
    stops growing.
    
    If you want any other information, feel free to call, send mail, or
    put a query in here.
    
    judy

    I don't know what hospital you are going to but I am a volunteer at
    Childrens in Boston and they have activity therapists during the day
    who have all kinds of games, coloring/painting activities, etc.  You
    can also call the volunteer office any time (day or evening) for a 
    volunteer to bring Nintendo to your childs bedside.  This is for all 
    patients, short or long term.
    Also, my daughter had surgery around the same age and they don't really
    remember as long as you think they do.  After a few days she was up and
    running around again like nothing had ever happened.  It really is a
    whole lot harder on mom than it is on the child.  I also know for sure
    that Childrens has a pre-surgery program so you can take the child in
    before surgery to see what the operating room, etc. is like and so both 
    you and your child can ask questions.
    I'll keep you in my thoughts.
    
    Marie
    

    
    
    Will he be asleep before going into the surgery room?  Will
    they be using the nose drops to make him drowsy also?
    
    I was 3 years old when I went into the hospital to have
    all of my baby teeth capped.  They told my mother that
    i would be "out" before going into the surgery room.
    Wrong!  They put me on the bed and wheeled me in there and
    before going in I remember the nurse saying to me, "It's
    going to taste like bubble gum".  I didn't know what she
    was talking about.  I was 3 and I guess hearing the word
    "bubble gum" was supposed to make me excited or something
    but it only made me leery and scared.  I kept asking
    "What tastes like bubble gum"? and they wouldn't answer me.
    Then I knew, even at 3, I was in deep you-know-what.
    I went in there and they put a huge black mask (looked
    like a boxing glove) over my face.  I screamed my head off,
    I thought they were trying to kill me or something and I
    was scared out of my mind.  They had to strap me down and
    it took them 2 tries with the anesthesia to finally put me out.
    My mother said she could hear me yelling from down the hall.
    I'm 23 years old now and will *never* forget that experience.
    I would have preferred to be kind of out of it or completely
    out of it before i went in there.
    
    I don't mean to scare you, but it would have been nice
    if my mother explained to me what was going on and
    I don't remember her saying anything to me so that
    probably why I was so frightened.  Maybe her just
    telling me that they were trying to help me, not hurt
    me and that I would be o.k. and she'd take me out 
    for an ice cream aftewards :))) would have been o.k..
    
    I'm sure everything will be fine!
    
    I'm still afraid of that hospital and i'm having my
    baby there in Febraury!! 

Re: tubes

My oldest son Zachary (now 6 1/2) had tubes put in his ears at 4 yrs old. 
A few weeks before his surgery we were able to take a tour of the
hospital floor on where he would stay/recover.  Also the hospital 
supplied us with a video tape to look at.  I can't remember the name of 
it but Mr. Rodgers was the narrator.  The tape talked about what to expect
in the hospital; such as a shot, a mask over the face for the anesthesia, 
the masks the doctors and nurses wear, etc.

At 5 1/2 Zachary had to have tubes back in his ears (they had fallen out
after 11 months). He also had his tonsils and adenoids removed at the same time
so this time the surgery was alittle longer (he was still an out patient but
required to stay longer; surgery was at 8am we left the hospital around 5pm).
The only bad memory Zachary has of the surgery was the shot he had before he
went under - he didn't like it  (the shot was to make him drowsy).

Re: coping

It is definitely harder on the us parents then on our kids.  I can definitely
relate to your anxiety, but at it was stated before TRY to take one day at a
(I know easier said then done).  

As for keeping AJ busy, does he like cars?  I bought Zachary connectables 
(matchbox size cars that are interchangeable).  Does he like puzzles?  Or
(at little more expensive) but a talking Big Bird/Mickey Mouse/Teddy Ruxpin? 

Good luck. 
Nancy 

FYI - I live in NJ.

    Lyn,
    
    Christopher had eye surgery when he was 4 years old, and he remembers
    it VERY WELL to this day, so I think you're correct in being concerned
    that he'll remember it.
    
    Our biggest mistake was in not quite preparing him enough - and in
    trying to downplay what turned out to be a *BIG* source of anxiety for
    him.  
    
    The Dr. had patients scheduled back to back.  The child before Chris
    was sick, so his surgery was bumped up almost 2 hours, and there wasn't
    time to give him the valium they had planned on.  They told us that we
    wouldn't be able to accompany him to the OR, and we had told Chris, but
    when the moment came and Mom started tearing up, and he was *MUCH* more
    alert than anyone had anticipated, it got real scarey for him.  I guess
    in the OR he started crying, screaming (*HE* told us this, everyone
    else said he was fine) until they put him out.  He woke up in recovery
    crying for us, and then they brought him back.  That was the worst of
    it.
    
    This was done at Emerson Hospital in Concord, MA.  They have a
    pre-surgery party for the kids the week before.  This was nice because
    he got to meet a couple other kids who would be having surgery the same
    day, so when we got there on the day of surgery, he recognized Jamie
    (how'd I remember that?!), and felt better.  At the 'party', they tour
    the pedi ward, show the kids all the toys, gave the kids balloons,
    showed a movie (don't remember what about - details of events?), and we
    all sat around and ate cookies and drank juice.  It was a REAL nice way
    to take the edge off the anxiety.  If there's nothing formal at your
    hospital, I would **STRONGLY** suggest requesting a tour, or just walk
    in and look around yourselves.
    
    On the day of surgery, we didn't quite have ALL the details we'd have
    liked, and things weren't "as they said".  We were told he could bring
    his own pjs, but when we got there, they made him wear a hospital gown
    which he hated.  They told him they could bring in a 'teddy' or
    whatever, which he did, but they weren't careful to make sure he had it
    in recovery - it got left in some pre-op room (they took it away before
    going into OR!!!!!!).  I would suggest GOING to pre/post-op and talking
    to the people THERE and ask them what you can and can't do, and what to
    expect.  Also, the nurse on duty the day of surgery was different than
    who we met at the party, and this one had the personality of an old
    lady who hadn't eaten in a zillion years - *I* was ready to smack her,
    I can just imagine how he felt.
    
    This may sound weird, but Chris was *VERY* concerned where his 'stuff'
    (clothes, toys etc) was going to be while he was in surgery.  A little
    comfort and reassurance.
    
    AFTER surgery, it was **NOTHING** like what we expected.  He was
    COMPLETELY out of it.  Part of this was attributable to the patch he
    had on his eye, and it made him "want to close his other eye", so made
    him sleepy, but he was **SO** groggy.  He threw up a few times, quite
    unexpectedly each time, and this upset him terribly - never bothered
    him before to throw up.  In general, he felt like SH*T, and just wanted
    to go home.  He was VERY afraid to ask for anything to eat or drink,
    and only wanted to lay down and have me hug him.  Of course Ms.
    Personality tried to kick me out of his bed while my husband almost
    sent her to the moon, so be prepared for this kind of stuff.  He had an
    I.V., which they put in after he was out, which we had not prepared him
    for, which *REALLY* seemed to bother him.  
    
    He was not interested in playing with anything, talking about anything
    or doing much of anything at all except maybe crying and being hugged. 
    We had bought him some toys, and a couple small things.  He could've
    cared less, but did take one of the small Hamburger Erasers (amazing
    the things you remember!), and held onto it for the next day and 1/2...
    Maybe a small (clip-on type?) bear or car or something he can just hold
    onto.
    
    He did throw up on his 'blankie' once, which was major trauma, so if AJ
    has such a thing, if there's any way to bring an 'extra', it'd be WELL
    worth it.
    
    He was pretty out of it for the rest of the day, and pretty much all
    the next day.  I don't remember him being in pain - a lot of discomfort
    from the bandage itself.  MOSTLY, he was REAL groggy and weepy -
    certainly understandable.  By two days after surgery he was bouncing
    off the walls again.
    
    As for Dad and Me .... I sat there and cried pretty much the whole time
    he was in surgery/recovery.  I felt so HELPLESS .... if he'd been out
    the last time I saw him, I think it would've helped, but instead he
    was being wheeled away, calling for me.... (gawd, that still hurts...).
    Dad wasn't doing a whole lot better.  Chris also ONLY wanted me, which
    didn't make Dad feel very good, so try to prepare you and your husband
    for that possibility ....
    
    As for now .... well, we're coming up on 2 years ago (in Jan) for
    surgery.  Once in a while Chris will still talk about it and ask why
    they did certain things or complain that the people in the OR were mean
    to him, or complain or try to explain how it felt to have his eye
    bandaged.  Mostly just wanting to talk - sometimes looking for
    sympathy, and also wanting to know if it will need to be repeated
    (might need to).
    
    We tried to be as honest with him as we thought he could deal with.  He
    knew at least a week ahead of time that he was going to have his eye
    "fixed".  We told him more details only a few days ahead of time, at
    the Drs suggestion, so as to reduce Chris' anxiety time.  In hindsight,
    I wish we'd talked much more, and for a longer period ahead of time. 
    But Chris is the kind of kid who takes a while to think about and
    absorb things before he asks questions, so you'll have to judge AJ on
    this one.
    
    *QUITE* a while later (maybe almost as much as a year), he told us
    about him screaming in the OR.  When asked why he didn't tell us
    sooner, he said he thought that we'd be mad at him for screaming.  From
    this I would say that it's VERY important to stress to AJ that WHATever
    he feels, it's okay to feel.  If he's mad, it's ok to be mad, if he's
    scared, hurting, etc.
    
    Good Luck, Lyn!  If you'd like to talk about this off-line, or have any
    questions, please feel free to get in touch with me!
    
    Patty
    dtn 381-0877 BCSE::WEIER

    First of all, THANK YOU eveyone for such wonderful warm thought, both
    here and off-line, It truly is a lifeline.
    
    Just to clarify, AJ will be going into Umass Medical in Worcester. 
    It's a place we all know just a little too well.  (His medical bills to
    UMMC during his first year were over a quarter of a million!)  I don't
    believe they do pedi-ward tours, but they do (did,it has been a couple
    years since he was last an in-patient there) have a well equiped
    playroom, and staff.  They used to have an atari, that you reserve to
    use.  I, at least personally, am familiar with the preop, post op area
    at the hospital, and the procedures, he may not remember it however,
    and that part is creating some anxiety on my part.  I know I can stay
    with him in the preop area until he is actually taken to the OR. I can
    only hope they will give hime something to relax him, he's been having
    some real bad "clingy" times for some reason lately.  Dad is his number
    one here!
    
    I do have concerns about explaining the actual proceedure to him.  I
    mean without being gross, how do I tell him that they're going to make
    an incision in an area very close to his private parts (anus), and take
    a piece of his spine off!?  I can only imagine that it's going to hurt
    like H*LL when he wakes up, and probably on his belly at that.  I know
    that if the recovery area isn't busy with other patients they will
    usually allow me to go see him as soon as he's awake. They do limit it
    to one parent at a time, so we will have to swap off.
    
    He's never been attached to one blankie or toy in particular, but I
    will probably make sure that "prize Puppy" goes with us for sure, he is
    a particular favorite.  And of course his favorite Ninja Turtle
    slippers, and a coloring book and crayons to keep him busy.
    
    Still open for ideas, suggestions, and how to's....
    
    Lyn
    

    Lyn,
    
    As for explaining it to him .... presumably he's noticed the lump?? 
    Maybe you could show him that Mom and Dad don't have one and explain
    that he has an extra bone (is that what it is?), and that the Drs are
    going to take out the extra one so that .... and give him a simple
    explanation of WHY they're doing this.  ...because it might get sick if
    it stays there or whatever ...
    
    With Chris, he has amblyopia and strabismus (visual and physical
    defects).  We explained to him that both his eyes don't always look the
    same way, and if they don't that one of them will stop seeing well, and
    then it won't be able to see at all.  With the surgery, the Drs try to
    make both eyes look the same way at the same time, and hopefully
    that'll make them both see the same things.  Since he is "doubly
    visual" (he can see 2 distinct things at the same time, one from each
    eye), he understood what we were saying.  When people asked him about
    it, he'd just say "One of my eyes are a little bit sick, so we have to
    try to make it better".  Sometimes he'll go into depth about it, but
    for the most part, he's content that HE knows what's going on, and just
    gives the basics to folks who ask.
    
    Is there a simplified explanation you can give AJ?  We saved the real
    details for AFTER the surgery so he wouldn't worry much about it. 
    
    Good Luck Lyn!!
    
    Patty
    

    Lyn, I have no experience with my 5 yr. old having been hospitalized
    but a few ideas on how to keep him occupied during recovery based on my 
    son's interests:
    
    I ditto the Magna doodle --and possibly buying one of the accessory
    sets that do shapes, etc, fairly cheap.
    
    Some new coloring books/markers?  They have coloring books made of heavy
    paper/one sided especially for coloring with markers.  My son thinks these
    are special.
                                 
    My son gets into the audio tapes and books -- not just the more jr.
    Disney tapes, but the ones with semi-soundtracks to movies?  We bought
    our son a terrific "The Rocketeer" tape at Toys R Us this summer.  It's 
    two sided and very much like listening to the real movie( All the
    characters talk) with a narrator to describe actions -my son is/was
    totally absorbed (he LOVED the movie!).    
    
    Can Santa deliver an early gift (expensive?)  If your son likes Legos,
    how about splurging on one of the big sets? My son would kill for 
    that Lego Pirate ship but AJ would have to LOVE legos to pay the hefty
    price ($80???)  Or more (too?!) expensive, if he likes to color/draw, and 
    UMASS has a vcr and tv available, how about that new video Artist thing that
    just came out?  It goes for close to $100 but allows a kid to draw and
    color on a tv screen.  I'd love to buy that for my 5 yr. old but can't
    afford it this year.
                                     
    FWIW-- I was hospitalized when I was 5 for tonsil removal.  I remember
    it but it never was a nightmare for me.  I remember feeling tricked by
    my parents because they told me I would get ice cream after the surgery
    but they didn't tell me (didn't realize!) that my throat would be so
    sore that I wasn't able to eat anything anyways!  I also remember the
    fear of the mask they placed over me but I mostly remember my parents 
    ALWAYS being there to comfort me-- a pattern that continues to this
    day!  And believe it or not, there was a boy in the bed next to me and 
    I distinctly remember being embarrassed by his seeing my bare bum when 
    they would give me a shot!  I thought I'd mention that in case your son 
    has a female roomate --you may not think he''d be modest in front of her 
    but maybe...                  
    
    It would be so hard for me to deal with this, when our kids are cut, I
    think we're the ones that bleed!

re: 181.48

>Mike was restrained by a harness until the following Tuesday.  This meant I 
>couldn't hold him at all.( This broke my heart everytime he cryed all I could 
>do was stroke his head or arms )  They had to keep him flat on his back until 

	For me, that was the toughest thing.  In fact it was the most
	toughest incident in my life.  Lara had just come out of open 
	heart surgery.  She awoke from the anasthesia, and they said we
	could see her, but only for a few minutes.  When she saw us she 
	tried to sit up, but the combination of being weak and being 
	restrained prevented it.  We couldn't really do anything for her.
	Emotionally, I was just overwhelmed; it was such a relief to see
	her well enough to sit up, but so heartbreaking to know that she 
	needed to be held, and we couldn't do anything for her.  Even now
	I cry when I think about it.  All I can say is be prepared.

	Regarding how much they remember, my daughter is now 11 and she
	remembers very little of her open heart surgery which was done 
	when she was 4.

	Clay

    
    Lyn, 
    
    I don't know if AJ's surgery has already taken place or not, but I just
    read your note and wanted to offer a few suggestions.  Jake, my 5 year
    old just had his tonsils out the Friday before Thanksgiving.  We had
    to stay in the hospital overnight (Mass Eye and Ear Infirmary).  By
    the way, they did take his tubes out while he was under anesthesia and
    pull wax out of his ear canals but it was the same doctor doing the 
    tonsillectomy.  As for entertainment, Jake slept the entire day after
    coming out of surgery!  He threw up 3 times but just went back to sleep
    afterwards.  By evening he was alert and I gave him a few presents.  I
    gave him the Where's Waldo book which he seemed to really like.  And I
    bought him a little video game the Chip and Dale Rescue Rangers one 
    (Toys R Us) $19.99.  It was great, not too complicated, he always
    "wins" since he is playing only himself and it makes a noise that kids
    love and adults abhor!  Also, and this proved very soothing, I was
    allowed to go into the operating room with him until he was "under" and
    they told me I could read to him or sing to him or whatever.  I brought
    his favorite book from home and just read it from cover to cover and
    then a second time through until he was asleep.  It was comforting for
    BOTH of us.
    
    I wish you and AJ the best of luck.  
    
    -dorothy
            

    To all of you, again, my sincerest thanks for all your help, support
    and concerns both on and off-line.  It really brings tears of
    gratitude!
    
    I'm leaving at noon today, to deal with pre-testing.  Something I'm not
    looking forward to.  I'm sure I'll have to deal with a thousand
    questions from residents, anesthesia people, nurse practictioners and
    then on to the worst stuff, the Xrays, and the ultimate Blood test. 
    After that my mission is to keep this kid healthy until next Thursday. 
    I called the pretesting people who advised me NOT to have a flu shot
    done at this time, and I just hope he doesn't get something later in 
    the winter.  It started out as "oh just day surgery" progressed to
    "well we'll just keep him overnight", and is now approved through John
    Hancock for a "two day stay".  One of the managers in my group related
    that a relative of his had a similar surgery, and was out of commission
    for over a week....!!!???
    
    will keep you all posted.
    Lyn

    We survivied the Pretesting!  He actually did extremely well, all
    things considered.  We arrived with plenty of time to spare, I swore I
    would not raise his (our) anxiety level by rushing him.  It's a good
    thing though, since the hospital has moved the pretesting area to an
    annex off of the main building.  We went to the old area, which is now
    part of the pedi-clinic and were redirected.
    
    Outside of a mild panic attack he did well.  His greatest anxiety seems
    to be that he will be left alone, without mom or dad being there.  I
    reassured him that I would be sleeping right in the room, and described
    it as a "pajama party", he thought that was "neato mom!".  He allowed
    them to draw blood from his arm, I sat him in my lap and gave both
    upper arms a big hug, and two lab techs drew the blood.  One of them
    sort of put her body in front of him and pinched the lower arm.  They
    say that sort of confuses the child and they don't react quite as bad. 
    He shook like the dickens but never really fought them at all, he's
    really a trooper!
    
    They have a agreed to sedate him, by putting some medicine up his
    rectum and he will most likely be almost asleep by the time he is
    actually taken to the operating room. He will the first case that
    morning, 8a.m. and we have to have him there by 6:15.
    
    Tonight I'm taking him to McD's for supper. Yes I AM spoiling him just
    a little, and either later tonight, or tomorrow-time permitting, we'll
    hit a store and pick out a few *small* toys to take, and he's been
    asked to pick out three of his favorite stuffed animals from home to
    take.  We'll be taking PJ's from home, including a special pair that
    his gramma recently gave him for no particular reason.  We've told him
    that he can have all the things he likes to eat, they even have chicken
    nuggets, yogurt and ice cream, and he likes that idea.
    
    I will keep you posted...
    

    We're back, truth is MOM came back to work for a rest! :-) !!
    
    We arrived a little late, (dad has this thing about being late for
    everything!) but it just made waiting in the pre-surgery area a little
    shorter.  They gave him toys and viewmasters to play with, everyone
    from anesthesia staff to surgical nurses came to introduce themselves.
    His pre-op med was nose drops, it was a little unpleasant but he really
    didn't fight it, almost instantly became "tipsy", he was too groggy to
    object to the separation.  
    
    Surgery went well, both with the spinal surgery and the minor procedure
    of removing his ear tubes.  We went to the floor to settle into his
    room, have breakfast and wait what seemed to be an eternity, but was
    about an hour and a half.  He was just barely awake, not even enough to
    remember anything, when the recovery room called to say we could go and
    sit with him.  Hubby and I took turns being beside him, but hubby
    stayed with him mostly, since I was with him entirely during preop.
    
    The rest of the day wasn't real pleasant, he was very sick to his
    stomach, couldn't keep anything down, but he did manage to sleep most
    all day and night.  They were really good about pain meds, most of it
    was put in through the IV, so no shots were needed until later in the
    evening, when he had one in his leg.  Fortunately he can be reasoned
    with and knew that it will hurt for a minute but will help in the long
    run.  By morning he was able to keep things in his stomach so he could
    get pain medicine in liquid form.  We spent the next day detached from
    his IV, but still with the hep-lock (the needle part) still in his arm,
    just for the antibiotic he was receiving a few times a day.  He was
    willing and able to play in the playroom, but slept almost all
    afternoon.  We decided to bring him home later in the day, after
    supper.
    
    He's a little sore, still. But not stitches on the outside, and we've
    kept the sutures covered with a small gauze pad and he gets occational
    plain tylenol.  We didn't like the idea of coming home with codeine in
    tylenol, he's had only about two doses and that's the end of that.
    
    He's aware of the scar area, seems to favor it a bit, but today he's
    back in pre-school and teacher said he's a little quiet but not
    appearing to be uncomfortable.
    
    We had some unexpected discipline problems, he's been extremely sassy
    to anyone and everyone.  He is real quick to realize that all he had to
    do was push a button and he became the center of attention.  Now he's
    trying to push *MY* buttons, but I'm in the class of "mean mommy" I
    threaten that Santa won't come if he's not good.
    
    He received, from my manager, a bag of goodies.  The instructions were
    for him to open one per day, there were 5 total, so he got one each
    morning and one each night for 2.5 days.  Most were small, bed sized,
    quiet toys.  Mini slinky, coloring book & markers, puzzle etc. I didn't
    have to provide much more than that.  He had his Ninja Turtle quilt,
    and slippers from home, and a couple small favorite stuffed toys.  The
    admitting people were great they gave each toy a name and a wrist band
    to wear just like his.
    
    All in all a real positive experience, and minimal panic attacts.  As
    for me, I may never be without a backache again from the convertable
    chair I slept in!
    
    Thanks for everyone's love, and support both on and off line!
    Lyn