Conference moira::parenting

Check the medical file.  Press KP7 to add it to your notebook.

ccb

Where is the surgery going to be done?

I'd suggest finding out if the hospital has any special pre-surgery 
orientations for kids (and their parents!).  Our daughter had open heart 
surgery when she was four, at Children's Hospital in Boston.

We were able to visit the ward she would be in, and the operating room a week 
BEFORE she was admitted.  We were also able to talk to some of the staff.

I'd also suggest trying to find out if there are any other families who have 
been through similar surgery, and see if they are willing to share their 
experiences with you.

If there is no orientation, make sure to have someone in the hospital explain 
carefully to you and your daughter what to expect.  Ask a lot of questions.  
The more you know what to expect on the day of the operation, the less 
upsetting the experience will be.

There are several books about going to the hospital, appropriate for many 
different age groups.  If your daughter processes input that way, I'd suggest 
getting one.  Also, someone (I think it was Playmobil) make a set of toy 
figures of people in an operating room.  If it isn't too "young" for her, and 
if you think it would be of benefit, you can probably find it in most toy 
stores (it helped out our daughter, who was 4 when she had her surgery).

Good luck.

	Clay, the noter

Thanks for giving the topic a general name.

	Clay, the co-moderator

My first husband had a thyro-glossal cyst, which required surgery as an adult.
This was in about 1975, so things have changed somewhat.

While this is major surgery, it is fairly common and the procedure is not
tricky.  If I remember right, he stayed only overnight (the night after the
surgery).

    My son (age 16) had this done in December (day after Christmas
    actually, his choice).  It was done at Nashua Memorial Hospital Same
    Day Surgical Unit.  We went in early (I think it was 7 or 8 AM) for
    antibiotic IV therapy prior to the surgery as he had a heart operation
    when he was 5 and the surgeon was more comfortable going that route. 
    The actual procedure took 1 hour start to finish and he spent about 1
    hour in recovery and another hour or so in the unit to "sleep it off"
    and have something to eat - they won't let you go at Memorial unless
    you can keep food down.  We were home by 2PM.  He's got a small scar in
    one of the folds in his neck which will eventually barely show as the
    stitches were inside, thus no removal visit.  He spent the rest of the
    day resting and was up and about fully the next day - just had to be
    careful of the incision and we had to watch for infection because of
    the location.  Turned out the cyst was an infected lymph node, but
    being where it was they couldn't be sure until they removed it and
    being that the swelling wouldn't go down, it had to come out anyway -
    just in case. Fortunately all was well.  It's pretty scary when your
    child gets up in the morning with a lump on his throat the size of a
    golf ball.
    
    Anyway, that was our experience with this procedure - I know your child
    is younger, but I was told this is usually done on an outpatient basis.
    Hopefully it'll be that way for you.  Gook luck.
    
    

Thanks to all of you for your concern, replies, and pointers to other 
notesfiles.  I'll be sure to enter an update after the surgery is done.

Barb

Laura (my six year old) had her surgery today and came through with flying 
colors.  Everyone in the Short Stay unit at Nashua Memorial was absolutely
fantastic.  They made a nervous little girl (and a very nervous mother)
very comfortable with the whole process.

The cyst did not seem to be a thyroglossal duct cyst, but rather a sebaceous
cyst, like the kind one get under the skin from a clogged pore.  Laura's, 
however, was not under her skin but under the muscle in her neck.  This still
needs to be confirmed by pathology, so I'll update in a few days.  The surgeon
speculated that Laura had some skin cells left over (from birth) in that part
of her neck.  

Since there was no duct to chase down and remove, the surgery took only an hour
in all and was much less invasive than expected.  Needless to say, we are all
glad to be home again.  Thanks to all of you for your thoughts, suggestions,
and support.

Barbara

    Glad to hear everything went so well for you and your daughter.
     
    As parents we all worry, and that will never change.
    
    Happy endings are what we like to hear about,
    
    Lynne

Friday evening my new son Justin was born.  I thought I should put an 
update in here, and this seemed the best place for it.

Justin has been moved by ambulance to Memorial Hospital (where the *really* sick
babies go in Colo Spgs).  He has a blockage in his heart, and he will undergo
surgery Wednesday morning to get rid of the blockage.  Tuesday they will
cathetarize him (inject a dye into his heart) to find the exact location,
size, etc of the blockage. 

There is a 98% chance of survival of this surgery.  Because they go in from the
side, right next to a major nerve, the possible complications are 
paralysis or becoming mute, among other things.  Real scary stuff.

Shellie (my spouse, who gave birth to Justin) stayed at the hospital in the
"hotel" status, so she could more easily breastfeed Justin.  However, Justin
is so weak, he can only eat by IV, so Shellie came home tonight for the
first time since the birth.  

Evan, our 4 year old son, is going through many of the normal big sibling
type of things.  Since the baby is sick, Evan keeps coming up with his
stomach hurting (typically hunger, is all) or other various illnesses.
He has also asked for a pacifier and a bottle of milk.

It feels so strange to come home to the big beautiful 7 foot stork in our
front yard, announcing Justin's arrival, after having spent the day next
to him in the Intensive Care Nursery, and knowing that he won't be home
any time soon.  :-(

        Carol

{{{HAMP-HUGS}}} to you Carol...and to Shellie, Evan and Justin too!

	HUGS Carol, I know how you've been looking forward to Justin
	joining your family !!  My prayers are with you, Justin,
	Shellie & Evan.

	Debbi J

    Someone up there in the Springs should start a blood drive for Justin. 
    He will need it.
    
    Does anyone know if one can donate remotely?
    
    Bob

    
    Carol, Shellie, Evan, and little Justin,
    
    	Sending wishes of strength and health your way. 
    
    				Wendy
    

    Lots of love and prayers for a speedy recovery coming your way!
    
    ...Lori

    Give Evan and Shellie extra hugs and plenty for yourself.
    
    You're all in my thoughts.
    
    Please keep us posted.
    
    Jodi-
    

    Justin, Shellie, Carol and Evan, you will be in my thoughts and prayers.
    
    Take care of yourself
    
    Angie

    
    Best wishes for strength and happy thoughts for a speedy recovery...
    
    Take care and hang in there, hopefully Justin will be home with you all
    very soon!
    
    
    Chris 
                                                                           

Carol,

I tried sending you mail, but got an error about quota exceeded, so I thought
I would put this here and hope you see it and it is helpful.

First off, congratulations to you, Shellie and Evan on the birth of Justin.
I know how hard it can be to have a baby and have to come home without it
as I had my twins at 28 weeks, so they were in for a while.  I just thought
you may find it helpful to hear from someone who has been through something
similar to give you an idea of what to expect.  Feel free to call me at DTN
223-0314 (508-493-0314) if you want someone to talk to.  To give you some
background, my daughter was in the NICU for 10 weeks before coming home, but
my son was in the hospital for a total of 6 1/2 months before coming home.
He had 2 major surgeries due to a ruptured bowel (had to have to a bag for
stool), and we were told on several occasions that he wouldn't make it at all,
but after a very long road, he came home and is doing quite well.

The doctors will tell you all the risks which can be very frightening, but 
they are obligated to tell you so you can be prepared.  Keep asking lots of
questions, and ask for family meetings to talk to all his caregivers at once
to make sure you're getting enough information, that you understand what is
going on, you know what the plan is, what the risks are, and what to expect.
Take notes or write your questions down ahead of time so you don't forget 
anything.  Ask about the alternatives and long-term effects.  Be prepared for
him to have lots of tubes and wires after the surgery.  It just looks bad, 
but you can still touch him though you may not be able to pick him up.  
Brad liked it if we put one hand on his head and one on his feet.  Stroking 
tends to be irritating, so just put your hands there and talk to him.  You 
will be able to tell what he likes.  Also, one of the nurses gave us a trick 
that worked like a charm. Fill those rubber hospital gloves with warm water 
and put it over him like you are holding him.  It's warm and gives the baby 
that secure feeling they like.  

He will most likely be in an ICU just after the surgery and maybe for a while
til he gets stronger.  He may need to be intubated for oxygen (they put a
long tube down his nose or throat to help him breathe) but that usually comes
out immediately after the surgery.  He may also require supplemental oxygen
(I think you mentioned something about that already), and may get it via a
nasal cannula.  This is not a big deal, and the need does eventually go away.
In fact, my son originally came home (he was home for a 13-day stay during
that first 6 1/2 months) on supplemental oxygen, but was rid of it when he
finally came home to stay.  If Justin can't seem to get rid of his oxygen
requirement and comes home on it, I've got some extra nasal cannulas you can
have.  They will probably leave in a few IV's for taking blood and giving 
medication.  This is preferable to multiple sticks of the baby as it can be
tough to get those needles in, and if a lot of blood must be taken, the veins
get scarred so they have to look harder.

You might want to consider finding a blood donor.  Infants require fresh blood
so it must be donated within 5-7 days of the surgery, and usually requires
1-2 days of processing.  My son had 17 transfusions, and we were very concerned
about HIV contaminated blood, so we eventually did find a donor.  Blood that
is transfused to an infant is more carefully screened than adult blood as they
are more susceptible to things that won't affect an adult. There's this virus
called CMV that can be very serious for an infant, but would feel like a cold
if an adult got it, and the antibodies stay in your bloodstream once you get
it.  About 80% of the population has had it (and most everyone who is HIV+)
so may be difficult to find a donor who has not had it, but any blood 
transfused to an infant will be tested to be sure it is CMV-.  In fact,
I even donated blood for Brad when I was only 2 weeks post-partum as the twins
got my blood type, but I was CMV+.  It took us 7 donors before we found someone
we would trust to donate the blood.  It's kind of funny because my husband is
CMV-, but had the wrong blood type.

Also, I know you said Justin is on an IV for now for nourishment. That's 
probably TPN (it's a yellow stuff and provides all the necessary nutrients).
I'm sure the hospital has already told Shellie, but just in case they haven't
mentioned it, she can pump and freeze her milk for later use, especially if
they may want to feed him by tube rather than nursing so that he conserves
energy.  The hospital will have pumps she can use while there visiting him,
and they probably have containers and rooms for that purpose (the NICU we
used had all that, and gave me jars of sterile water to take home so I could
pump at home and bring the milk in).  The electric pumps tend to be much
more comfortable and get more milk out.

I could go on and on, but I think you get the picture.  Let me know if I
can provide support in any way as another parent who has been there but
would rather not have had those experiences.

It does get better.  Keep your chins up, and I'll be saying some prayers for
Justin and your family.

Regards,
Cathy Giunta

    <Courtesy of Richard Christie>
    
Carol called this afternoon and asked me to send a message out to update all
of you on the baby's post-surgery condition.

Carol was told the surgery performed on Justin's heart earlier today went
well.  They were able to take care of the blockage and the narrowing of an
aorta.  Justin is active and showing signs of improvement.  The medical
professionals at the hospital are weening him off the respirator and are
keeping a watchful eye out for possible complications.  The next 72 hours
should tell if there are to be any.

Carol sounded optimistic and relieved.

    May Justin continue to grow stronger with each hour and come home
    soon!
    
    Hugs to all four DuBois,
    
    judy

Thank you all!  Cathy, I wish I had seen your message before; the thing
about the stroking I was doing wrong until the nurses taught us!  :-}

Shellie is pumping and freezing her milk.  for now she needs to go on a bland
diet, and has to cut severely down on the milk she has been drinking.  If the
baby were to fuss over something in her milk, then they might think the 
fussiness was caused by something else, and it could make Justin stay
in the hospital longer.  :-(

People are wonderful.  Two of our friends have organized a food delivery,
where we get meals from various people every other night.  Since we have been
practically "living at" the hospital, this helps a lot.  We also had a friend
come fold our laundery, since it had been clean but hard to sort through
for days, and we just didn't have the time or energy to fold it and put it
away.  We have had many other offers for help now, but finally have nothing
that we need at the moment.

Justin has been on a respirator to make him breathe because they had given
him a drug/hormone to make his body think he was still a fetus.  This might
stop him from breathing, so they needed the respirator.  They finally just
took it off this morning (I'm typing this from home).  The reason for te
drug/hormone was to allow a passage to stay open as a shortcut for the blood.
This passage exists in fetuses, but closes after the first day out of the
womb.  This shortcut was close to the blockage in his aorta, so it helped
his blood to flow to his body, and kept him from having as severe heart
failure as he would have had without it.

In addition to the blockage (coarctation of the aorta, for those familiar
with this stuff) he also had narrowing of the isthmas, which means that
before the blockage it was also too narrow for the oxygenated blood to
pass easily, so his body was being deprived of oxygen.  This was causing
him congestive heart failure.  

I'll continue this in the next note...

They found the problem through a mix of luck and skill, it seems.
Justin was a myconium baby; he pooped in the water before he was born.
This caused the nurses to watch him more carefully, and they found he needed
oxygen (but only a little).   Our doctor also noticed a heart murmur, but
then couldn't find it later.  Justin's oxygen needs dramatically 
increased, and a nurse found the heart murmur again (which the doctor 
couldn't find for 2 days).  She called our doctor, who called in a
neonatalist.  The neonatalist listened to the heart at length, then spoke
to our pedi who called in a pediatric cardiologist.  He did an echocardiogram
(heart ultrasound) and some other tests, then Justin was sent by ambulance
to Memorial, where they have an excellent ICU for babies.  This doctor
told us that a major hurdle with this problem is diagnosis, and that since
they had foud this so early, there had been no damage to the heart; it was 
only "tired".  He said that Justin could have died within 10-14 days, had
they not found this.

Tuesday they threaded a wire up his leg to his heart to inject dye into
the heart and study the location and size/shape of the blockage.  Risks:
stroke and/or loss of his leg.  As it turned out,they had to do this with
both legs.  It was successful; no complications.

Wednesday they did the "open chest" surgery to fix his heart/aorta.  
They spread a couple of ribs on his left side under his arm and went in there.
It has a *big* incision (just got to see it today).  The isthmas was narrower
than they had thought, and the surgical team held their breath for 20 minutes
to see if the surgeon would be able to put together the "good parts" after
cutting out the "bad parts".  He was able to.  If he had not been able to do
this, he would have had to sacrifice the artery for the left arm, which 
would have run the risk of losing the left arm.  Risks: death, stroke,
losing the left arm, paralysis because of cutting off the blood t the
spinal cord during the surgery, or becoming mute if he accidentally cut
the major nerve controlling the vocal cords (which they had to pass by
as they went in).  He was not very active after the surgery, but he did 
move his legs a couple of times.  Today he finally got off of the respirator,
and though his voice is weak and hoarse, he does have one.  Now we just
watch for infection (and maybe bleeding?  that seems okay now, too, I think).

Lots of risks.  Lots of scary stuff.

All seems well now.  He will *probably* be in the hospital for 2-3 weeks
post-surgery.

       Carol

Carol,

Glad to see that it went well.  He'll probably be hoarse for a few days,
but that's just due to the respirator and will go away shortly. The
respirator tube irritates the throat and vocal cords which is what causes
the hoarseness. It seems to me that it took Brad a couple of weeks before
he wasn't hoarse any more, but he was on the ventilator for 8 1/2 weeks
so his irritation was much more severe than what Justin should have.

Also, that massive scar will fade in time.  Babies have an incredible 
ability to heal as they are always growing.  I remember when Brad was
circumcised that the doctor said it would heal in 3 days, which it did,
but that the same thing on an older child or adult would take a few weeks
as a way to explain to me how quickly babies heal.  Brad's scar on his
abdomen is about 1 year old now, and is mostly faded on the right side
but still more pronounced on the left side (it goes across the entire
abdomen), so I can see that it will mostly go away.  I would expect 
Justin to react in a similar way.

It sounds like Justin pulled through just fine and is on his way to 
recovery.  I'll keep praying that he's home with the rest of the family
real soon.

Cathy

    From:	CSC32::DUBOIS 
    Subj:	Justin duBois may be released soon!

Justin is doing much better than even the doctors expected!  He may
be released from the hospital this weekend!

He is currently on 20 cc's of diluted breast milk, and expected to go to
30 cc's today.  His only attachment currently is an IV in his neck (his
jugular - yuk), but they expect to take that out by tomorrow.  Also by
tomorrow or so, they expect to allow Justin to eat all the milk he wants.

He is looking so much better, and doesn't even need tylanol.  He sleeps
pretty much all of the time (except sometimes between 3-7 AM -- *groan!).

He just had a Cardiogram to check how the heart is looking.  They said
that they can hardly see the narrowing of the isthmus anymore, or even where
the surgery was done.  They had thought that once the blood starting going 
through that area at full force, that the blood pressure on the isthmus 
would force it to be wider.  It looks like that is what has happened.  :-)

       Carol

Thanks, Cathy, once again.  His voice *is* still hoarse, and I didn't think
it would be.  If it doesn't get better soon then they will check his vocal
cords before he leaves the hospital.  I knew his voice could be affected by the
respirator.  It could also be that they nicked the nerve for the vocal cords
during the surgery (it winds around that area around his heart).  I (and the
doctors) want to make sure it isn't anything permanent (or something they 
could fix, maybe) before he leaves the hospital.

Even the doctors are surprised that he is doing so well so quickly.
I know that the warm thoughts and prayers we have received from all of you 
noters have helped our dispositions.  I feel they have probably helped
Justin, too. Thank you.  You kindness means a LOT to me and to my family. 

       Carol

    Carol,
    
    Its so good to hear that Justin's progress is going so well.
    
    My hugs and prayers to you and your family.
    
    Give Justin lots of kisses for all of us noters!!
    
    ..Lori

    Carol,
    
    Brilliant news, Thank God!.   
    
    
    Bernie

    
    Carol,
    
    Its great to hear Justin is doing so well...
    
    I hope he is home with you, Shellie, and Evan VERY soon!
    
    Best Wishes,
    Chris 
    

    Carol,

    Let me add my "thank God" to the rest.......

    hope Justin comes home really soon to be with you, Shellie, and Evan 
    and that all goes smoothly from then on !
    
    Keeping you all in my prayers,
    Debbi J
    

    Carol,
    
    It is good news to hear Justin is doing so well!  It is amazing how
    tough neonates can be!  I hope that your family is united at home real
    soon!  
    
    My daughter was ventilated for 30 days, and she was hoarse for a couple
    of months...her voice is fine, and I pray the same for Justin.
    
    Beth

    Yay!
    I love good news!
    
    hugs for all the duBois!

Justin is still in the hospital.  Although we had hopes of getting him
out last Sunday (and had hopes of getting him out today) this did not
prove possible.  Justin was losing weight at a time when he should have
been gaining weight.  The doctors did not want him released until he had
gained weight at least 2 days in a row, and they wanted to do some other
tests as well.  

We also learned that we should keep him away from crowds, at least for the
first 3 months or so.  There is a virus, called RSV, which looks like a cold
for most people, which could send him back to the hospital.  We should avoid
taking Justin to places like restaurants, malls, showing him off at work,
etc.  Overall, he will have a normal life (other than lifelong checkups).
He would be able to play football if he wanted (a mother's nightmare) :-),
but for now he needs to be kept more isolated.  What we are going to do about
daycare, we have not decided yet.

Justin continued to lose weight through Sunday night.  He had lost 7 ounces
in 4 days.  Then Monday night he gained nearly 2 ounces, and Tuesday night
he gained another ounce.  All we were waiting on was the results from the
12 hour NAP test.  The NAP test measures his oxygen saturation through his
body, his heart rhythms and speeds, his breathing patterns and depths,
and correlates them.  Because Justin had been doing "periodic breathing",
where he would breathe deeply several times, then pause, in a regular 
pattern, and because he was losing weight, they thought he might need to
be on oxygen when he came home.  (Many babies have periodic breathing, btw,
without a problem; because Justin was losing weight they thought his 
periodic breathing might be a problem.)

The NAP test puts all this info on a cassette, then a machine transfers
the data onto hardcopy.  It takes 3 hours for the specialist to analyze
the hardcopy, and this hasn't been started yet.  It can then take 1-2 days
sometimes before the doctors look at it.  They will determine whether Justin
needs to go home with oxygen.

In the meantime, Justin lost weight again last night.  This time, at least,
it was only 1/3 of an ounce.

And so the saga continues...  :-}

      Carol

Justin gained another ounce last night, his NAP study came out well, and
they LET HIM OUT OF THE HOSPITAL !!!!  He doesn't even have to be on oxygen!
We brought him home this afternoon, and are trying to get him adjusted to
different lights, different noises, different everything.  The cats are
not particularly impressed, but haven't noticed him much, either.  Because
of his damaged vocal cord, he cannot cry very loud.  One of the cats is
so oblivious he actually *stepped* on Justin (and *still* didn't notice him!).

Evan knows Justin is coming home today, but hasn't been home to see him yet.
There is a Halloween party at his daycare tonight, so Evan won't see Justin
at home until afterwards.

Thank you all for your prayers, warm thoughts, and words of support.
They did a world of good for each of us.  :-)

      Carol

    Carol,
    
    Thank God, brilliant news.
    
    Bernie

    Welcome Home Justin!!
    
    Thanks for entering the good news Carol, you made my day!
    
    Linda

    Welcome Home Justin!!
    
	Hope all the family adjusts & enjoys the newest DuBois !!!!!!!!!

	I truly hope it's all such good news from here on but we'll toss
	in a few more prayers *just to be sure*  8-) !!!!!!!!

Debbi J

I'm back at work!!

Justin is doing better.  He gained 5 ounces in 6 days, and is now finally
past his birth weight.  We get him weighed every Tuesday, and hope that he
will soon be gaining an ounce a day.

His voice is improving now, too!!!!  Several times now he has used a REAL
VOICE!!!  I can often hear him crying in the next room, and sometimes it
seems he is almost doing "normal baby vocalizing".  Hooray!  Hooray!

Additionally, we've had some very good news from Shellie's company.  They have
a policy where the birth mom can have paid leave if the baby was born with a
prenatal condition which requires the birth mom to stay home and take care of
him. Both the pediatrician and the pediatric cardiologist have written letters
saying that Shellie should be with Justin until he is at least 3 months old, in
order to give him the optimum chance to gain weight properly and to keep him
safe from RSV (the virus which to him could be life-threatening). We are
waiting to hear back from the insurance company to see if this will be
approved. 

In the meantime, we are trying to figure out how to do Christmas shopping
without 1) leaving the house and 2) spending a lot of money.  :-)
I hope our friends and family will be happy with gift certificates and
photos of the family, because it looks like those will be the most common
gifts.

I've said it before, but I want to say it again: thanks for all of your
support, warm wishes, and prayers.  This has been a scary and stressful time
for us, and your kindness has been much appreciated.

        Carol (now to get caught up in work and PARENTING!)

	I don't know about your friends but the improving health of Justin
	ought to be enough of a Christmas present for the family!!!

    
    So glad to hear from you Carol, JUST YESTERDAY I was looking for this
    note to enter in and ask if anyone knew how Justin was doing.
    
    Sounds like all is going very well! Happy to hear the good news.
    
    Chris
    

    Gee,

    	Anyone who can figure out how to do Christmas shopping without 1)
    leaving the house and 2)spending a lot of money is worthy of a Nobel in
    my book ;-)

    	Welcome back Carol.

    				Wendy

	Carol & all,

	It IS wonderful to read your update - certainly lifts my spirits
	after a yuck-o day !!!!!

	For shopping from home, most of the catalogs nowadays have 
	800-numbers to call !!  But like MGILBERT said, I think everyone
	would just be happy knowing all's well with Justin and that
	you can ALL ENJOY THE HOLIDAYS WITH HIM !!!!!!!!!!!!

	Best wishes and good luck with the insurance co !

	Debbi J

    Carol,
    
    Welcome back.   Delighted to hear the brilliant news about Justin.
    
    
    
    Bernie

    Good to hear that you are all doing fine. 
    As another noter suggested, catalog shopping is wonderful (I've been
    doing it for months now - especially when Charlotte had colic). Another
    great suggestion for gifts is pictures of Justin. Just take a few 
    family shots and have some enlarged. 
    
    Monica

So glad to hear Justin is doing well and gaining weight.  As far as the 
Christmas shopping, we were in the same boat last year as Brad had just come
home from the hospital.  I found time for shopping was tough to come by, so
I did lots of Christmas cookies and home-made gifts. I make lots of jam every
year, so bundled jams and cookies in pretty Christmas packages, and everyone
was quite thrilled.  I'll be doing the same thing this year.  Baking is not
that difficult to do around a baby's schedule, and you can do things like mix
the dough and freeze it for later use.  If you're comfortable with baking,
it might be worth thinking about.

And everyone loves pictures of a baby. You could cover photo albums for the
grandparents so they'll have a place to put the pictures you send of your
children through the year.  I even made a larger version for us.  I think you
can find things to make at home that will please everyone, won't take a lot
of time away from home, and are not costly.

Cathy

These are wonderful ideas, and I hate to put a damper on them, but my
moderator conscience is getting to me.  If anyone else has ideas on gifts
for the holidays which 1) do not require a lot of time away from the house
and 2) aren't very expensive ($20 tops), the would you please share them
in note 28 ("Parties and Gifts")?  I really appreciate the ideas!

        Carol

    Hi Carol.
    
    I'm really glad to hear the great news about Justin.  It's also great
    for Shellie to get paid leave.
    
    Angie.
    
    I will post my Christmas give ideas in 28.

    After several years of watching my son's throat almost close because
    of huge tonsils, his doctor has *finally* approved a T&A (tonsillectomy
    and adenoidectomy).  My son is 9, and it will be an outpatient surgery
    (home the same day).  I understand it will take him about two weeks
    before he's back to his old self.
    
    For those of you who've been through this with your children:
    
    1.  What did you do to make your children as comfortable as possible?
    2.  What do you wish you'd done differently?
    3.  Did anything happen that you wish your doctor had warned you about?
    4.  Any hints you'd like to pass along?
    
    Thanks,
    Pam
     

    Pam,
    
    The only thing that comes to mind is something that my husband
    remembers from his own childhood surgery (and confirmed by my son's
    medical experience): don't let your doctors lie or even downplay things
    in a major way. I'm pretty sure nobody does this anymore, but in the
    "old days" I gather it was common. Frankness and honesty are best for
    kids. Best wishes.
    
    Lucy 

    Had mine out when I was eleven -
    the only really negative experience I had (aside from the 
    fact that my hospital stay was a little stressful in that it was 
    a french hospital and since this is not my first (or second) language
    I had some trouble communicating) was in returning to school - 
    
    It seemed to be a long time to be away and I was very hostile about
    the idea of going back (and normally I liked school).
    I felt the teacher was not very welcoming either. Perhaps had I had
    some contact with classmates (to relate what I had missed) I'd not
    had felt so terrible in returning.
    
    Monica
    (and the jello tasted *awful*!) 8-)< 

    Pam,
    
    I agree with .47 in that truthfulness will help a child much more- I
    feel that I was this way with my son when he went through this last 
    year.  He was only 4 but I tried to convey to him that he was going to
    be uncomfortable when he woke up, I kept reminding him that I would be
    right there (except of course for the time just before he went in to
    have the surgery done, that was the toughest part for both of us).  
    This might not apply to your son, but they allowed him to bring his
    favorite stuffed animal in with him.  Something I hadn't thought of
    was the fact that he would have an IV which didn't trouble him much
    afterwards, (I think they put it in after he went to sleep),
    it just made it awkward when he had to go to the bathroom.  You
    mentioned that it was a day procedure- when we went to the hospital
    for our initial visit we were also told this, but the Dr. also said
    there was a chance that he would have to stay overnight.  I wasn't
    expecting to, but we ended up staying because Sean developed a 
    slight temp/wheeze from the anesthesia.  He had to wear a cool mist 
    mask and he was OK the next day.  You may want to ask your Dr. about
    this so you can make plans to stay- it was no problem for me to stay
    as far as the hospital was concerned.  The only thing I remember doing
    for my son to make him feel more comfortable was keeping a cold face
    cloth on his throat and checking with the nurse as to when he could
    have ice chips, water, etc.  
    
    Linda

    Chris already knows what's going to happen and why he needs the
    surgery.   His friend had his tonsils out recently, so that helps.
    
    I had mine out when I was 4.  I remember being promised all the ice
    cream I could eat when it was over.  They never said that *swallowing*
    would be the furthest thing from my mind.  I also remember throwing
    up blood all over my bed.  But because I was 4 (I'm told that the 
    older you are, the longer the recovery period), I started bouncing back
    to normal after 24 hours.
    
    I guess what I'm looking for is experiences with older kids.  What do
    you do for them when you know they're *so* miserable?  Oh-- and Chris
    is having his tonsils out on a Wednesday, so he'll only miss three days
    of school.  He'll recover during the following week (vacation), and return 
    to school the Monday after that (hopefully). 
    
    Thanks,
    Pam

    My son had them out when he was 5 (not as old as Chris) but some of
    the same things apply.  He didn't want to swallow, was very stoic, 
    but he was miserable.  What we were sure to do was NOT eat any
    of his favorite items around him (no pizza, no candy), offer him
    ice cream whenever he felt up to it.  Mostly I spent my time
    distracting him from the pain, or at least trying to.  I bought him
    a hand-held video game that I knew would be exciting and new and keep
    him occupied.  When he became bored is when his throat started to 
    really get to him.  My younger son had his out when he was 4 and he
    did poorly in recovery.  Took him a good 2 weeks to recover while my
    oldest was better within a week.  Expect major weight loss though.  My
    very slender children dropped 8 lbs a piece and they really didn't have
    it to lose!
    

    Just jumping in here, after a some time away.  Has the surgery happened
    yet? All in all how did he do?
    
    What seemed to amaze me the most were the instructions of NOTHING but
    soft solid food for the first WEEK, and NO SCHOOL or activities, like
    running and jumping etc.  I figured a couple days and back to
    preschool.  Thankfully I have my inlaws to rely upon, we stayed home
    the first three days, alternating work schedules, and let him stay with
    grammie and grampie for the rest of the week.  Lots of grandparent
    "treats" like scrambled eggs, eggnog, frappes, icecream, pudding etc.
    and oh yes, grampie took him to the store and he came back with a
    bubble sword and a QUART of bubbles!  Actually it was nice, one of the
    days my inlaws offered to keep him overnight, we actually got a mini
    vacation.  Only down side is that it was a work night on both sides.
    
    Lyn

Our youngest son Justin is now 8 1/2 months old.  As many of you know from
the earlier notes in this string, he had heart surgery when he was 4 1/2 days
old.  

After he got out of the hospital (age 3 1/2 weeks?) he did fine developmentally.
His only problem was that he has not gained weight well.  

They said that this was normal for heart babies, but I expected it only to
be a problem for a couple of months or so.  They had us in for weekly weight
checks.  Justin was born at the 50th percentile for height and weight but 
dropped his weight to between the 5th and 10th percentile after his surgery. 
He stabilized around the 5th or 6th, I think.  Then, after working hard at it
(breastfeeding *all* of the time, it seemed), we got him to the 8th or 9th
percentile. Then, about 3 months ago (I believe), he started only gaining small
amounts of weight.  In a month where he should have gained at least 16 oz, he
gained only 4 oz.  The following 2 weeks he should have gained at least 7-8 oz
to stay on his percentile, but instead he *lost* an ounce.  He's now at less
than the 5th percentile.  They don't tell you where under the 5th.

We spoke with the doctor and she wasn't too concerned.  She said that he 
probably would just be small.  (She is the same doctor who so quickly caught
his heart problem when he was first born).  Nevertheless, she ordered some
tests, and spoke with his pediatric cardiologist as well.  He said he wanted
a chest X-ray and wanted to see Justin.  We did the tests last week.  The blood
test and the urine test have not come back yet.  The kidney ultrasound came
back perfect. However, his chest X-ray didn't.  They said the X-ray itself
wasn't the best picture, that it is really hard to get a good X-ray of a baby. 
However, the heart seems to be borderline too large. 

We're worried, of course.  We see the cardiologist Monday, so will know more
then.  I don't know all of the things that could cause the heart to be
enlarged.  I know one of the risks of the surgery that he had was that 3% of
the babies experience a problem when the sutures don't grow along with the
baby.  I believe we learned that when the artery is partially blocked (as it
was) then the blood flow that went back into the wrong chamber could cause
the heart to get too big.

This is really a bummer.  I'm trying not to worry disproportionately - maybe
it's okay.  However, I still didn't sleep well last night.  :-(

    Carol

    Carol,

    If I remember, when my kids where born at Eisenhower Hospital, I was
    told that kids born at that altitude have a tendency to have enlarged
    hearts.  Not terribly enlarged, but larger than a child born in a lower
    altitude!

    Also, both of my kids were in the lower 5% for weight, until they
    started jr. high... Sarah is now 17+ is 5'4" and weighs about 105,
    Brent will be 20 this month and is 5'11" and weighs about 145.  Brent
    for a long time thought that he was going to be really short and
    little. but he isn't!

    Justin had a hard start, and may take some time to catch up..... weight
    wise that is.  If the doctor really doesn't seem that concerned, then
    relax and enjoy him!  (I know, easier said than done... believe me, I
    really do know).

    My thoughts are with you all for the outcome of his tests.  Here's
    hoping they say he is perfectly normal, and just needs to catch up a
    little!

    I am not surprized that your suffering sleeplessness  - parents
    ALWAYS worry! Just don't try to get a head of yourself until all
    the information is in. And remember, some people ARE small, even
    when other members of the same family may not be. 
    
    Monica
    
    P.S. I hope you won't be on vacation next week when I come around
    to hunt for you again! 8-)

<    P.S. I hope you won't be on vacation next week when I come around
<    to hunt for you again! 8-)

I'll be here!  :-)

The doctor called last night (9:30!).  :-)  She said that the heart could look
big in the X-ray and not really be big, just be scrunched up a bit (like a
balloon, if you squeeze it smaller one way, it gets bigger another).  She also
got the blood test results in.  One of the results was off, and she called
an endocrinologist in Denver and he said it will likely go back to normal as
Justin gets older.  We're to do blood tests every 3 months for now.  Everything
else looks fine.  I slept a little better last night.

We go to see a pediatric urologist in Denver today to discuss yet more surgery -
this time on Justin's penis.  He was born with hypospadius, which means that
instead of peeing out of the tip of his penis he pees a little lower.  They
will fix this mostly for cosmetic reasons (and so he can pee standing up and
can get a woman pregnant more easily - if he chooses to).  If the cardiologist
we see Monday okays it, he will be having the penis surgery in the next few
months. 

Anyone else here have a boy with hypospadius?  How'd it go?  Did you ask them
to try to save some of the foreskin?  (The foreskin is used for the repair)
Were they able to save any of it?

       Carol 

[Reprinted without permission from the August 1993 issue of Parents Magazine,
Q & A Health section, p. 45.]

Q  My 8-mo.-old was born with a condition called hypospadias, and our
pediatrician says he will need corrective surgery around his first birthday. 
Will my son be normal after the surgery?

A  Yes. "Your son should be perfectly normal after surgery," confirms Richard
M. Ehrlich, M.D., clinical professor of surgery and urology ant the U.C.L.A.
Medical Center.  He recommends, however, that you have the procedure performed
by a pediatric urologist and a pediatric anesthesiologist to increase the
chances of complete success.
   Hypospadias is a condition, present in a small percentage of male babies at
birth, in which the opening of the urethra is not in its normal location at the
tip of the penis.  In the majority of cases, the urethral opening is slightly
shy of the tip, and reconstructive surgery is not necessary.  In cases
considered moderate (the opening is on the underside of the shaft), and in
severe cases (the urethral opening is farther down the shaft, near the scrotum),
surgery is important; uncorrected moderate and severe hypospadias can adversely
affect adult sexual functioning and fertility.
   Although surgery for hypospadias can be performed as early as 6 months if
your baby's penis is large enough, or as late as 18 months, 12 months is the
optimal age.  "Timing is important," comments Ehrlich.  "If you wait until your
son is two or older, a surgical procedure will be more difficult for him to
deal with psychologically.  Also, psychosexual problems may arise when your
child's playmates notice that his penis is different in appearance from
theirs."
   Surgery for hypospadias can usually be performed on an outpatient basis and
requires only one procedure; recuperation time is around two weeks.  After
surgery, your son should have normal urinary function, a penis that appears
normal, and, later, no fertility problems.

    Can anyone provide some pointers to good books that discuss preparing
    both yourself & your child for potential surgery?
    
    We've been monitoring our 3 1/2 yr. old's bone disorder for the past
    year.  Unfortunately, there's been some pretty rapid growth to the bone
    spurs he's got.  In fact, just between his two legs & one shoulder he's
    got about 16 of them -- some growing in towards joints.
    
    His currently specialist referred us to Dr. Pappas because he feels 
    Bobby should be getting the attention of a Pediatric specialist in the
    field.  Anyway, just from looking at the x-rays, I'm getting really
    concerned & have the feeling that Bobby will be facing surgery in the
    next year or so.  Any ideas on how to approach the topic with him when
    the time comes, or pointers to good books would be appreciated.
    
    Thanks,
    
    Linda
    
    BTW - I'm pretty sure about the surgery because Bobby's dad has the
          same condition, which halts when you reach maturity -- he had
          four surgeries while growing up, but didn't face one till he
          was in the eighth grade.

    Linda, 
    
    You have said enough by mentioning your surgeon.  Contact the hospital
    itself, it has a great Child life staff, they have a person who is a
    "play therapist" who uses actual operating room things and plays games
    and really helps the most nervous little patient to be OK before,
    during and after sugery.
    
    AJ has had 14 surgeries, only two of them were with the great doctor,
    but I found great comfort in the fact that first, you usually are
    admitted only the morning OF the sugery, you as the parent can stay
    with your child right until he is taken to the actual operating room,
    the pre op/post op staff (same people) are too fantastic for words! and
    you will be called to come stay with your son just as soon as is
    phsyically possible after the operations.  Plus the hospital has a pedi
    "rooming in" policy, a chair that breaks down into a bed for mom or
    dad, and two Nintendo games on the pedi floor, and free TV with free
    Disney channel included.
    
    Does this give you any more reassurance?  Contact me off line if you'd
    like to chat more.  There were times when I felt that hospital was a
    second home!
    
    Lyn
    (whose son spend over half of his first year at *that* hospital!)

    Thanks for the words of advice/comfort Lyn - I may just follow up with
    you offline, after Bobby's consultation.  I guess I'm getting wound up
    about this for a couple reasons:  
    
    1 - It actually *scared* me that, whatever Bobby's current specialist
        said to Dr. Pappas' office, I don't know, but they called us
        back within one hour of that call to schedule Bobby's apptmt
        with him & APOLOGIZED because he couldn't see Bobby till Aug.
        24th! (& I KNOW it's difficult to get in that early with ANY
        specialist)
    
    2 - Bobby's condition is on a much more rapid growth path than his
        father's ever was & he's beginning to complain about aches, etc.
        I just have these nightmares picturing Bobby's condition going
        totally out of control, with no way of slowing things down.
    
    3 - Bobby's current doctor didn't want to talk specifics anymore after
        this visit - he said it would be better for us to discuss Bobby's
        case with the new doctor.  He did, however, indicate that Bobby
        is definitely a candidate for surgery (when, he wouldn't say),
        & that since he is getting away from the pediatric orthopedic area
        that he wanted Bobby to go to who he would send his own kids to
        (& did).
    
    Anyway, once we see Dr. Pappas later in August, I'll update my note &
    we'll hope for the best.  But again, thanks for the pointer -- I'll
    also follow up on that after the consultation.  Say a prayer!
    
    Linda
                

Also see Parenting V3, note 1225

    
    
    Linda - 
    
    I don't know if your child has ever experienced surgery before.  If
    not, I'd add that my experience is that the parent should be ready to
    act as patient advocate.
    
    If you're working through a Children's hospital, or another pediatric
    oriented facility, you're probably ok.  But if you can get your doctpr
    to talk you through the entire procedure, you'll feel more comfortable.
    
    One small example from my book:
    My 2.5 yr old was going in for outpatient surgery.  I asked (but did
    not insist) that she be given smethng to take the edge off, or make her
    groggy. "nope, can't be done, and besides, she won't remember
    anything."    Umm, wrong!  Not only did she remember EVERYTHING,
    including how she was *held down* while they put the anaesthic mask on,
    she even remembered they then to switch to a smaller mask, in mid stream, 
    because the first didn't work.  She was still in diapers at the time,
    and she wouldn't let us lay her on her back for months following the
    surgery. 
    
    
    The second round - and yes I did use the same surgical team, for
    medical reasons, - she got the shot, but they almost grabbed her from me
    before she was really groggy... mainly because the anaesthesiologist
    had shown up late and their reserved slot for OR time was only so long.
    
    
    I don't mean this to scare you; more to encourage you to *insist* on
    putting your child's interests first
    
    
    Jamd
    @>-;--

Re .62
    >If you're working through a Children's hospital, or another pediatric
    >oriented facility, you're probably ok.  But if you can get your doctpr
    >to talk you through the entire procedure, you'll feel more comfortable.
    
I don't necessarily agree with this.  From my experiences at a Children's
Hospital, you still need to make sure you are the patient advocate.  Don't
assume that there's one there among the team of people you have because you
will have some different concerns than they will have. And although they
can probably anticipate most of your concerns, they may miss 1 or 2, or
they may not realize how much a concern something is.  Keep asking questions,
and encourage your child to ask if he wants to.  That may help him to feel
a bit more informed and in control, and may help to deal with the surgery.

    I feel obligated to speak in defense of the OR team and the whole pedi
    staff, where AJ has had and her little guy is aparently going to have
    surgery.  They are excellent, even as an infant there was NEVER an
    occation where he was taken from me out of control, he has never had a
    surgery (he has had over a dozen surgeries at Umass Medical) where
    preop medication wasn't administered!  I remember one surgery where he
    was still a small infant, and the preopsedation was put right into the
    IV rather than a shot (suppositories are available too) and he was so
    "tipsy" that he had to be held up as they wheeled him into the OR.  He
    was just awake enough that he wouldn't totally conk out, and kept
    insisting on siting up.
    
    I found the staff is good in many ways, especially listening to a
    parent.  If I told them to leave him alone because he had just gotten
    to sleep they did!  If I felt he had been poked once too many times by
    a phlebotomist, or she just didn't have the techniques with kids down
    pat, I requested either a doctor or IV nurse and they listened to me.
    
    What else can I say, plus she's dealing with a very famous doctor, just
    ask the Red Sox!

    re: .64- 
    
    Lyn, I'm really glad to hear that the hospital will take excellent care
    of Bobby.   However, I also wanted to note that knowing Cathy & what she 
    went through to provide the best care for her two little ones while they
    were in the hospital, I'm sure her comments were meant more as a way of
    telling me to don't be afraid to speak up when dealing with hospital
    staff.  Obviously, one should never "assume" anything is a given --
    especially when it comes to their kids. 
    
    But again, it's re-assuring to know both the facility and the doctor
    are viewed so highly by someone who's obviously had a *lot* of first hand
    experience dealing with both!
    
    Linda

    I just thought some folks might be interested in an update on Bobby.
    We saw Dr. Pappas yesterday - he was absolutely wonderful with Bobby.
    Bobby was very comfortable with him - let the doctor hold him, do a
    thorough exam of his bones (by hand) & basically did anything he was
    told to do.
    
    Bobby is a very boney kid - there's no doubt that he will be facing
    surgery  - the question is how soon.  Dr. Pappas wants us back in 
    January to do x-rays, to provide a growth comparison to the x-rays
    we had done in July.  Apparently, by hand manipulation, the doctor
    was able to feel some more spurs in one of Bobby's shoulders.  This
    seems to be the area he is most concerned with - since that shoulder
    already makes a clicking sound when Bobby moves it.
    
    One of Bobby's legs is likely to be the second point of surgery --
    again, no telling when, but with the x-rays, we'll be able to see
    how fast they're growing & be able to gauge things a little better.
    
    My husband and I are both very happy with Dr. Pappas' approach to this
    - he's being very conservative about surgery, given that Bobby is still
    so young & will no doubt be facing it at certain points of his life
    until he reaches maturity.  Surgery will only occur when it becomes
    absolutely necessary (as opposed to "just because the spurs are there") 
    
    There's still the fear of the unknown -- since we didn't already have
    x-rays to run a comparison, we really didn't get to discuss how Dr.
    Pappas thinks the condition is likely to progress & what are some of
    the concrete issues we'll be facing (types of surgery/rehab/one leg
    being longer than the other - which is a possibility)
    
    I guess we're going to have to take each situation as it comes - but in
    the meantime, Bobby can do anything any other kid his age does.
    We realize there are so many kids with worse problems than this, so our
    fear is balanced by our thankfulness that this isn't life threatening
    (as far as we know!).
    
    Thanks for all the support!  If anything else develops, I'll keep you
    informed.
    
    Regards,
    
    Linda
     

And an update on Justin, now age 10 months.

As a memory jogger, Justin had heart surgery when he was 4 1/2 days old.
His heart was completely fixed, and the only side effect seemed to be a
temporary loss of voice, due to the stretching of one of his vocal cords
(which healed itself).

Since then, Justin has not gained weight well at all.  He was diagnosed
as failure to thrive.  Many people said not to worry, that this was common
with heart babies.  Our pediatrician ran some tests which didn't show
anything wrong, or not much, and she said he must just be so active that
he is burning the calories.  He was developmentally doing great, even started
walking at only 8 1/2 months old.

However, we didn't feel he was much more active than our first son, and though
he *acted* normal, he still wasn't gaining weight well.  He fell off his
percentile curve, and though he was born at 50th percentile, and after the
heart surgery got up to 8-9th percentile, he started dropping *well* under
the 5th percentile.  The doctor started being a little concerned again when
his height percentile started losing ground, too.

We have power-packed his formula, added margarine to his solids, etc.  
We're still trying new things.  We are also getting ready for his second 
surgery, to repair his hypospadias (he doesn't pee out of the tip of his
penis, but a little further down on the shaft).

To prepare for the hypospadias, they decided to give him testosterone shots
to increase the area of the surgery (every man's dream, right?).  :-)
They would give him 2 shots, the first being 6 weeks before the surgery,
the second being 2 weeks before the surgery.

Most babies his age (even in the 5th percentile) gain 3 1/2 to 4 ounces each
week.  Justin has been gaining only an ounce a week.  The week of the first
testosterone shot he gained 6 ounces!!!!!  The next week he lost 2 1/2 ounces.
Today he went in for his second shot and we found that in the last 9 days
he had gained 8 1/2 ounces!!!!  SOMETHING is going right!  :-)

So that's the good news (finally).  We also, unfortunately, got some odd news.
We had done a "sleep study" on him 4 weeks ago to look for apnea (intermittant
breathing).  The results have come in and they show either pulmonary
hypertension or reflux.  It's true that he *used* to have quite a bit of
reflux, but he hasn't done that in months.  The cardiologist says that there's
no way that he has pulmonary hypertension, so we (and they) don't know _what's_
going on.  The doctors will confer, then talk to us.  One of the questions
we are asking is whether this will require the upcoming surgery to be
postponed.

At least he's gaining weight now...  We hope the trend will continue.  :-}

      Carol

    Carol, wish you were closer.  I can only recommend specialists on the
    East coast!  I had a former manager who had a son with cardiac
    problems, and he too was a "failure to thrive" baby.  
    
    This is a horrible roller coaster ride, and I know that you and Shelly
    want nothing more than to get off!
    
    Sending hugs, and warm support to all of you.
    BUT, CONGRATS on the weight gain!  Good going in that department!
    
    Lyn

    Carol,
    
    Delighted to hear that Justin is gaining weight.
    
    I will pray that Justin's hypospadias will go very well and that the
    cardiologist will find nothing seriously wrong.
    
    My hugs and support to you all.
    
    
    Bernie

    Carol,

    Even tho' I've written you off-line, just wanted to add my congrats
    here as well as hugs !!  We'll keep ALL of you in our prayers and
    hope things the positive progress !

    Debbi 

    	I wasn't really sure where to put this note and so I'll post it
    here. As many of you know, Spencer was hospitalized two weeks ago with
    an allergic reaction to pineapple, if not for the medication he
    received, he could have very nearly died.

    	Last week Griffin was hospitalized due to a bacterial infection
    that just overwhelmed his body. By the time I drove him from the
    Doctor's office to the Emergency room, his temperature had dropped (he
    was going into shock) so low that he had to be stripped and they put
    hot blankets on top of him. Four times they unsuccessfully tried to
    start an IV and ended up just giving him antibiotic injections instead
    (massive amounts of liquid into both legs at the same time) every
    twelve hours.

    	Both kids are fine now, you'd never know they had been through
    anything.

    	It's (again) us that are still recovering. It's very, very hard to
    have a child hospitalized. It's very, very  hard to realize (and I mean
    have it hit you between the eyes) that your children could leave you
    for whatever reason even with your best care. It's very, very hard to
    not have any control over the situation.

    	And it's very, very hard to see them hurt your child in the name of
    medicine.

    	Last week I wanted to pack it up and just give in, I didn't want to
    be anyone's mother anymore. I wanted to stop caring so much about these
    kids. It's just too hard.

    	This week, I'm a little better and I'll accept being the mother
    again.

    	Just wanted to let you know that sometimes, it can really, really
    be tough.

    				Wendy
             
    	

    I agree, Wendy, that it can be tough, but I also know that it does get
    better.  And if it weren't for you, who would your children have to be
    the champion for them and make sure they get the very best care?  It's
    hard when your child is sick and you can't make it better. And the very
    young ones don't understand why it hurts which makes it that much more
    difficult for the parents. But there's so much medical knowledge today
    and they can do some amazing things.   Just this weekend we attended
    Brad's reunion of Winchester Hospital's Special Care Nursery graduates.
    There is no way I can describe how good it felt to see all those kids
    who once needed so much care, went through so much, and hung on by a
    thread at times now growing and thriving and just having a great time
    being kids.  And my Brad, who was such a sick baby and who we almost
    lost more times than I care to remember, was just a wild 2-year-old. 
    He was the one who first spotted Barney coming to join the party. And
    he was the one chasing Barney's tail and dancing and hugging Barney
    (he's such a shy kid ;)).  Certainly a lot further along than anyone
    would have thought when he was born.
    
    I know what you're feeling like and how helpless you can feel when your
    child is seriously ill. But I also know that no one can love your child
    like you can, and no one can go to bat for him like you can.  And
    hopefully, they won't remember being that sick because they're so
    young. But they do grow and get better and move on to other things.
    
    Hope you're all feeling better now. And give those kids an extra hug
    and kiss. That always makes me feel a lot better, and neither of my
    kids has every complained about getting a little extra loving!
    
    Cathy

    Wendy,
    
    Hang in there. It definitely hurts us more than it does the little
    ones. But I agree that knowing that something can happen to our kids in
    spite of all our care is scary. Seeing little ones in the hospital is
    no trip at all. I remember very clearly the first time I saw Avanti
    in the recovery room after her spica cast was applied the first time.
    She had tubes in her nose/mouth to help her get out from under the
    effects of anaesthesia and the gas had made her voice hoarse. As soon
    as I saw her (at 7 months of age) that way and crying hoarsely with her
    eyes semi-open and hands reaching out ( I still am getting tears in my
    eyes ) I could not take it and started crying. My husband was the
    strong one that day and he told me take a walk around the hospital to
    gather up the strength to come into the recovery room and comfort
    Avanti.
    
    Have faith and gather up all the strength and be happy that your
    kiddies are OK and put the unhappy things behind you. (I know it is
    easier said that done).
    
    Good luck
    
    Shaila

These situations can be very emotionally draining, but they can be positives 
later on.  Sometimes, it's helpful to get these powerful reminders of how 
fortunate we are.

>    I remember very clearly the first time I saw Avanti
>    in the recovery room after her spica cast was applied the first time.
>    She had tubes in her nose/mouth to help her get out from under the
>    effects of anaesthesia and the gas had made her voice hoarse. As soon
>    as I saw her (at 7 months of age) that way and crying hoarsely with her
>    eyes semi-open and hands reaching out ( I still am getting tears in my
>    eyes )

And you will get tears in your eyes for a long time.  There is a scene 
remarkably similar to yours that is forever engraved in my memory.  It was in 
the intensive care unit after open heart surgery about nine years ago, and it 
still draws tears.

And it also helps me at times when, like most teenagers, my daughter can be 
the most irritating person you can imagine.  Sometimes when I conjure up that 
image, it reminds me how very lucky I am to have a daughter at all, and often 
prevents me from saying or doing something really stupid.

Clay

As a parent of a disabled child, my sanity gets tested every day. As he grows
up, it gets harder and harder. And I get stronger and stronger. You will, too.

I feel blessed and very, very lucky to be Patrick's father.

Chris

Gosh, Wendy.  You've had tons of trouble lately!!!

Well, speaking of hospital visits, we just got back from yet another 
hospital stay ourselves.  Since a few people are asking me for updates,
I thought I would enter this so that people can learn about what we went
through, and if someone is expecting this type of surgery for their child,
then they can learn from our experiences.

******************

Eleven month old Justin had his hypospadias surgery Thursday morning, Sept 9.
It went well in the hospital, and we were able to be with him and hold him as
he feel asleep from the gas.  He was a little scared, but that passed very
quickly.   They didn't give him any shots or use an IV or do anything more to
him until after he was asleep.  We appreciated this very much. 

The surgery turned out to be more complicated than they thought.  First of all,
his urethra wasn't fully developed from about mid-shaft to the hole (the hole
was where the head and the shaft would meet).  This meant that they had to
reconstruct about 3 cm instead of the 1 cm that they had expected.  Secondly,
they tried to save the foreskin.  We had asked him to do that if he could.
However, since he was only born with foreskin about 3/4 the way around, this
also meant that they put new foreskin on where it had been missing.  We didn't
expect them to be able to do it. The doctor evaluated it during the surgery and
thought that he could do it. As it happened, what he decided to do was breaking
new ground, not written up in any medical journal.  We were impressed that he
was able to do this, and hoped that it would work. 

We also learned that in using part of the foreskin to create the new urethra
that they do not cut off the foreskin and patch it on.  There is a blood 
supply in the foreskin so they just cut part of it and bend it down.  Turns
out there's an inner and outer foreskin, so they used the inner part for the
repair. (whoever thought this lesbian would learn so much about penises?!)  :-)

He came out of the surgery well, and wasn't even crying when they let us see
him after he woke up (they wouldn't let us be with him *as* he was waking up).
His penis was dark purple and quite swollen, and the shaft was wrapped in tape
to keep the swelling down (and probably to keep it together where they had
sewed it).  He also had a catheter that was supposed to stay in at least 7 days,
and we were supposed to bring him to the doctor in 2 weeks to remove the 
catheter (about 50% never stayed in that long, they said)  They had him double
diapered so that we would only have to change the inner diaper when he had
a bowel movement.  The catheter drained into the outer diaper.  

They kept him at the hospital overnight and Shellie stayed the night with him
while Evan (age 5) and I were in the hotel.  One of the nicest things about
this hospital was that they had a sibling daycare so Evan could be taken care
of while we took care of Justin.  Since it didn't open until 8:30, though, and
since we had to have Justin there at 6:00 AM, we also brought a friend to take
care of Evan. 

The day after the surgery, Justin decided to start walking again, and was a
happy camper as long as no one was examining him or diapering him.  We were
told we could go home, and that we would need to give him 2-3 baths a day,
starting Saturday.  We also needed to fully cover his penis with neosporin
after diaper changes and baths.  We got home without incident and things were
going *so* well that Evan and I went to pick up some videos. 

Bad move.  

While we were gone, Justin finally had the poopy diaper he had not had since 
before the surgery.  Shellie tried to change the diaper and 2 things went 
wrong.  First of all, the poop *saturated* the tape around Justin's penis.
We were very concerned about a risk of infection.  Secondly, while Shellie
was concentrating on all that poop, and getting it away from his penis, 
Justin reached down and...YANKED on the catheter, apparently ripping the stitch
that was keeping it in.  Of course he then screamed bloody murder and glared
at Shellie, thinking she had done it.  The catheter wasn't all of the way out,
but now urine would go *around* the catheter, too, and get on his penis, and
of course he was bleeding a bit, and from then on it took 2 of us to diaper
him and bathe him, since he could pull it out the rest of the way at any
time.  *sigh.

So, that's how I spent my weekend: diapering (holding little hands and 
distracting baby, who was usually crying during the diaper change) and bathing
(same thing, usually keeping toys in his hands).  The doctor on call for our
urologist told us there was nothing we could really do; couldn't replace the
catheter and we had to just get all of the poop off of the tape that we could,
and leave the rest. The tape finally came off last night (okay, so we cut some
of it - the tape was still *green* from poop!).  We also noticed that Justin
has a nasty looking sore on his behind.  He sees the doctor later today about
it - this came from the hospital, but we don't know what it is.  One area of
the foreskin has also turned black; looks like we will lose it.  I hate to
think of him having more pain.

We see the urologist again next week.

The good news we learned last week is that the testosterone shots cannot
cause the continual dramatic weight gain we've seen in Justin!  
The testosterone can increase his appetite, but it would have only happened the
week after the shot, not the next week or the next.  Justin was gaining 1 ounce
a week, and in the last few weeks has been gaining around 6 ounces a week!!!!
He's still not at the 5th percentile, but he's getting there!  :-) 

       Carol

Carol,

Could the sore on Justin's behind be a bad case of diaper rash caused
by the IV solution? I ask because one of Brad's side effects from when
he had his ileostomy reversed was this incredible case of diaper rash 
which was caused by the TPN they used to feed him intravenously. In his
case, since his bottom had never experienced a messy diaper, the combination
of the acidic intravenous solution on his tender bottom caused a diaper
rash so bad as to be bleeding.  I'm wondering if Justin may have had some
sort of nourishment intravenously because of the surgery, and if that can
be causing his sore.  If you think that could be it, you can try a variety
of things like zinc oxide mixed with A&D and stomahesive, or straight zinc
oxide, or yogurt (that's what worked for us).  Regardless, you probably
want to cover that sore with something so that it's not exposed to wet or
messy diapers and just get worse.

Hope Justin is feeling fine soon.

Cathy

He was on an IV.  We've been covering it with neosporin (and once with 
Desitin) but it hasn't gotten better, and may be worse.  Apparently it started
by looking like a bruise.  Now it is red with a big white area in the middle,
and it's all flat.  Anyway, I should be hearing back from Shellie shortly
about how the doctor's appt went to look it over.  I'll let you know.

      Carol

Our pediatrician thinks it's a burn.  Shellie has called the urologist's
office.  We won't get a call back until tomorrow morning.  We are applying burn
ointment. 

How he would get a burn in surgery (chemical?  heat?) I don't know.  But I'm 
going to try to find out, and find out why a) they didn't apparently notice
and b) if they did notice, why we weren't told so we could treat it *correctly*.

     Carol

    
    I don't know if this could be similar, but when I had my D&C when I had
    my miscarriage in '90 I ended up with a horrible red rash on my behind.
    It ended up being a reaction to the antisceptic that was swabbed on me.
    Since it trickled down and "pooled" along my behind which was kept warm
    due to my being prone or sitting for the whole day, the heat caused me
    to have this reaction. Maybe what's happened to Justin is something
    similar, and where a baby's skin is much more sensitive than an adults
    the reaction is more in the form of a burn instead of a "burning rash".
    
    Patty

    A while back I wrote about our son Bobby's problem with bone spurs. 
    Well, just this past Tuesday we had a follow up visit with  his 
    specialist at UMass.  X-rays were done and, apparently, there are four
    spurs at present that are of concern (over all, we could see at least
    fourteen on the just x-rays of his legs and arms that were taken).
    
    Bobby has one below the knee which very noticeably protrudes already,
    and one above the same knee, but behind the leg. The doctor is concerned 
    because the one behind the leg is very close to a major leg nerve & if 
    it continues growing at its current rate, it could cause nerve damage, 
    leg weakening, development problems, etc.  The other one has just grown 
    so much that it sticks out, under his skin.  Along with those, there are 
    two up on one shoulder -- one growing on the backside of his scapula & 
    one growing into the shoulder joint from the front side.  Both are 
    causing very noticeable clicking & are inhibiting his arm mobility.
    
    The bottom line is, we're waiting for the call from the hospital to
    have these surgically removed sometime next month.  We haven't talked
    to Bobby about this yet, since he seems to deal worse with situations
    if we spend too much time in advance discussing what they will mean for
    him (like discussing the fact that he will be getting a shot at the
    doctors, before he actually gets there, etc.)
    
    Some folks in previous notes mentioned that UMass has a way of helping
    parents work with their kids to prepare them for surgery -- I hope to
    get more details when they call us.  We opted to have the surgery on
    both the legs and the shoulder at the same time, rather than holding
    off on one area till later (which we could have done for the legs).
    My husband has had four surgeries for the same problem & felt very
    strongly about getting as much done at one time, to minimize the
    hospital stays & the amount of times Bobby would have to deal with the
    healing process & therapy.
    
    If anyone else has thoughts on best approaches in dealing with the
    topic of surgery with their child, both before hand and afterward,
    that would be very helpful.  We don't want to go "overboard" about this
    since as we all know, if kids get the sense that they have some
    emotional hold on you, they tend to take more than reasonable advantage
    of it - and yet, we want him to know we sympathize are there for him
    throughout the whole thing.
    
    Once we get more details I'll update.
    
    Thanks,
    
    Linda

    Anything on hernia surgery?  Grandaughter is 18 months old, and may
    need this surgery.  Don't have any details yet; appt with surgeon on
    11/2.  It's in the groin, both sides. 
    
    What are your feelings about surgery in general, and hospitals in
    particular.  Would you choose Children's Hospital over a local
    hospital?  General anesthesia?  My daughter mentioned the benefit of
    local setting and attention, over Boston and 'assembly line' setting??
    Don't know if I agree with this.
    
    I have a friend who is a pediatric nurse at Children's who says she
    would never allow her child to undergo general anesthesia anywhere else 
    because they know how to handle everything.
    
    Opinions?  Advice?  Suggestions?
    
    Thanks
    Lorraine Maguire
    Email  OFOSS1::MAGUIRE

    At about that age, our son popped an 'egg' in his groin that
    turned out to be a hernia.  We could massage it back in but it
    would keep popping back out...especially when he would cry or fuss.

    (he's now 8, so my memory is a little hazy).

    We made all the arraingments to have him operated on at our
    local hospital.  They made it sound like no big deal.  About a
    week before the operation, we got a call from our adoption agency
    that they had a baby they wanted to place with us.  (The way they
    phrase it "Your daughter was born yesterday").  That meant 'abandon
    ship' and we all were on the next flight to Florida where she was
    born.  We cancelled all plans here in Mass, including our son's
    operation and started over in Florida.  We eventually had it done
    in the Children's Hospital in Tampa, Florida.  It was wonderful
    and likely was much better handled there than locally here
    in Western Mass.

    Everything at Children's was designed just for kids.  For example,
    they had cartoons on the ceiling of the operatiing room for the kids
    to look at as they went under anethesia.  The doctors there operated
    on kids everyday.  They weren't doctors who normally work with adults
    and sometimes work with kids.

    My son did not have to stay overnight.  He just had two butterfly
    bandages, no stiches on the outside.  He healed up in no time
    and the operation didn't slow him down in the slightest.

    He was NOT pleased that we were at the beach and he could not
    go swimming for a week.
    bob

    I'm not sure if this is the appropriate string to place this inquiry.  
    
    Our 4 year old is facing some surgery in late August at Mass Eye & Ear.
    He'll be in for 2-3 days and then have about a 2-3 week (I think) 
    recovery period at home.
    
    We haven't told him yet that he's going into the hospital largely
    because he's a worrier.  We are just wondering when it's appropriate to
    really start talking to him about this.  He has to go in the week
    before for some pre-op stuff so perhaps then?  Like I said he really is
    a worrier and we've found it best to hold out, but for something like
    this I don't want to leave him totally unprepared either.  I'll be
    staying with him during his hospital stay.
    
    Perhaps someone can recommend a particular age-appropriate book for
    preparing him for the hospital?  Any pointers at all would be
    appreciated.  Thanks very much.

    
    I have never been though this with my child but I was also
    a worrier when I was young.  My Mom was great about it.  
    Usually, before plunging into a new experience, like going
    to the dentist, she would take me to the office a couple of
    days before the appointment.  I could look around and get
    familiar with the place and talk to the people who worked 
    there.  Also, it is important to make your son feel comfortable
    asking you questions and it might be helpful to bring along
    some sort of snuggly, like a stuffed animal or favorite blanket
    when he finally goes so that he has something from home.
    
    Good luck,
    
    Pam

    
    My son had outpatient surgery when he was 3.  The 2 books we used were
    Rita Goes to the Hospital - from the AMA and
    Going to the Hospital by Fred Rogers
    I work in ZKO in case you'd like to borrow them.
    
    ELIzabeth

    Ask the hospital too .... they will usually run a "tour" for pediatric
    surgery.  When Chris went in, they had a party and saw a movie, and got
    to see everything and ask all sorts of questions and eat cookies and
    punch *AND* got to meet other kids who were scheduled for the same day
    they were ... so they had a "little buddy" when they came back for the
    procedure.  You should make sure you know the exact details about when
    you can be with him, and when he must be alone, and if he'll still be
    awake or asleep, and prepare him for that.  
    
    The pre-op party was 1 week before surgery.  This was at Emerson in
    Concord MA, but most hospitals have SOMEthing.
    
    Godd Luck!
    Patty

    I had surgery when I was 4, and have always been a worrier, too, but I
    don't remember being especially upset about the hospital stay.  I
    actually was pretty excited and felt "special", 'cause I got neat
    presents from my family, etc.  Of course, my surgery did not involve
    any major recovery time at home that I can recall.  I'll ask my mom how
    she prepared me all those years ago and report back later.
    
    M.
    

    
    
    My sons have both had surgery.  The 1 year old, there was really
    nothing you could talk or prepare him for except I was there right
    after they woke him up and cuddled him like crazy.  At one, time is the
    present, and I'm pretty sure at 18 months he has no recall of the event
    and that's good because he may have surgery again before too soon.
    
    My eldest (now 4) but was 2 1/2 at the time needed day surgery.  The
    hospital was wonderful with him.  His anesthia doctor met with us and
    told him that they'd make him sleepy and gave him a mask to bring home
    and pratice with and play with.  When the day came, I was allowed to go
    into the operating room hold my son on my lap while the doctor played
    with him and the mask again.  He was asleep before I even knew it and
    they I had to leave the room (which is when I felt all my stress etc.).
    When he woke up, that was the worst.  They call you right after they
    wake up (I would have preferred before) and it was scary because Andrew
    had a IV in and he wke up not knowing where he was, in some
    pain/discomfort and pulled the IV out, resulting in a mess, but I just
    help him close and let him "wake up again" on his own and get
    re-ajusted.  A couple hours later, you would never know what had
    happened except he was looking for his present!!!  
    
    Bottom line was the preparation and telling him what what would happen,
    the mask, falling asleep etc.  I think he would be a little more
    fearful next time becasue of the pain and waking up which wasn't
    pleasant, but the truth and knowing that Mommy & daddy were right there
    made a bad time bearable.
    
    Good luck to you.  I really think the parents should get medication
    rather than the kids.  We are far worst off then they are!!!