Hi Mark -- on Jan 11 2012 at 20:29, you wrote:

The time for my son's Hirschbrung's operation is getting closer. We
are looking at the last week of January or the first week of
February. I'm not happy about it - but also know it is needed.

That's not too surprising (the not happy, I mean).

The procedure will involve a large abdomen incision. Removal of the

[...]

I'll be staying at the hospital with him 24/7 until we go home.
They estimate 3-5 days in the hospital.

Just figured I would keep the group in the loop as to what is going
on and the progress.

Thanks - we'll be thinking of you all!


Cheers... Dallas

--- timEd/386 1.10.y2k+
* Origin: The BandMaster, CANADA [telnet: bandmaster.tzo.com] (1:153/7715)

Hi, Mark! Recently you wrote in a message to All:

The time for my son's Hirschbrung's operation is
getting closer. We are looking at the last week
of January or the first week of February. I'm not
happy about it - but also know it is needed.

[...]

I'll be staying at the hospital with him 24/7 until
we go home.

Good! I did the same with Nora when she was around the same age, and I can't emphasize strongly enough how important it is for a child to know s/he can count on Mom or Dad to be present under such circumstances.

Hang in there & keep in touch.... :-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

Hi, Mark! Recently you wrote in a message to Ardith Hinton:

Due to several recent factors, we have decided to hold
off on the operation for at least another month or two.

Okay. Thanks for the update.... :-)

There is value added to waiting for this particular surgery.
It is going to take a good bit of work on our part, but there
are potential positives for holding off.

Sounds as if it was your choice to wait, rather than a case of making
room in line for those with more urgent needs. Not knowing when something like
a surgical procedure is going to happen can be very stressful. Knowing you can
put it off until the timing works for you also has its advantages, though. :-)

So, I'm not sure when we will have this done - but I would
imagine no later than the spring time.

And no doubt the universe is unfolding as it should.... ;-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

Hi, Mark! Recently you wrote in a message to Ardith Hinton:

The choice to wait was in hopes of a less invasive
surgery and with more long term success.

Makes sense to me.... :-)

Basically, if we can get the effected area of the bowel
down in size by ensuring that he going to the bathroom
very regularly - less will have to be removed. Only
about 6 or 7 inches MUST be removed due to the condition
- but there is working bowel before that area that is
veru distended. If we can get it down in size, it has
been kept and used.

Yes....

We have been trying to do this for some time, but are
going to a more "aggressive" approach to managing it.

He may have difficulty with toileting before the call of nature is urgent, though... particularly in view of his age. The low muscle tone which often accompanies DS can be a contributing factor as can various medications.

We used a stool softener whilst Nora was in treatment for leukemia
& again after her stroke. On both occasions the doctor recommended something which is technically an OTC item but which one must ask the pharmacist for by name... I think because the professionals want to make sure their clients are receiving proper guidance WRT such items. I also tend to "push" raw fruits & veggies whenever I have reason to suspect Nora may be a bit constipated. ;-)

The thought is, we will see what progress was made in the
next month or so and re-evaluate. At this point in time,
I'm figuring it will be in the spring.

A month or so has already gone by, and I'm 'way behind in answering my mail. But please be assured we haven't forgotten you.... :-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

Hi, Mark! Recently you wrote in a message to Ardith Hinton:

With Hirschsprung's, the only way you can have a BM
is either when the pressure builds up enough behind
the transition zone or enemas.

Ah... I thought that might be the case.

We have had to use a combination of Miralax and enemas
to keep things under control.

You do what you have to do, eh? Sounds familiar... [wry grin].

A month or so has already gone by, and I'm 'way behind
in answering my mail. But please be assured we haven't
forgotten you.... :-)

Me too. :) Thanks, I appreciate it.

Glad to hear that! In SURVIVOR we answer when we can & whatever you have to say won't be dismissed as "old news" within the next few days.... ;-)

There is no update as of yet. We are still doing our more
agressive approach to keep him managed and will then probably
get another xray to see where we stand.

So the "transition zone" has in effect been stretched by the lack of response lower down, and now you're trying to get it to shrink back again with more aggressive use of laxatives & enemas?? I'd say it's worth a try.... :-)

Hopefully, it will have gone down in size enough to perform
the operation with the least amount of bowel removed (only
the section with no nerve cells)

I'm not a great fan of surgery either. I reckon it may be necessary at times when there is no other long-term solution... and that does seem to be how things are re the portion with no nerve cells. But I understand why you'd want to keep any surgical intervention to a minimum in this case. As a parent I've balked on occasion at somebody's idea of a dramatic rescue mission... and eventually forced them to admit they could probably use a kinder & gentler way of achieving the same goal. If laxatives & enemas don't work, you'll know you tried. But once a bit of anatomy has been removed you can't put it back. :-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

Hi, Mark! Awhile ago you wrote in a message to Ardith Hinton:

Hirschsprung's is when there are no Ganglion cells present
in a section of the bowel. Normally, these cells migrate
down the entire bowel before birth. For unknown reasons,
in people with Hirschrung's, the migration stops too soon
and doesn't go all the way to the end.

Ah. Is it possible the cell migration might continue, in some cases at least, outside the womb?? I'm curious re this detail because Nora was born with a couple of heart defects... perhaps caused by delayed development and/or by her appearing a little sooner than the doctors expected. These were things many children outgrow by the age of three or four, as did she. And as long as the symptoms are fairly minor surgery is not an option unless tincture of time has established that the problem won't go away without such intervention. :-)

The "transition zone" is the area of the bowel that goes from
having the Ganglion cells (which are needed for mobility) to
where there are none. The Ganglion cells tell your brain
(automatically) that something is there and "move it along".
Without these cells, the only way to get things moving is a
manual/physical stimulation like an enema.

A very good explanation IMHO... clear, concise, and to the point! I see you're well informed about your son's condition & I heartily approve. :-)

We just had an abdomen xray this past weekend. The official
results are not in yet, but from what I saw - the plan appears
to be working! The area is not only not as wide, but not as
long either. By a good inch or two.

Sounds as if you're onto something. Hang in there.... :-)

The less that needs to be removed, the better the long term
success.

And the shorter the recovery period, I imagine.... :-)

There is about 6 inches that have no cells that have to go.
There is another 6 inches that is distended - of good working
bowel. If we can get that to maybe 2-3 inches, that would
really help. From what we have been told, you can have up to
12" of bowel removed with no real long term side effects.

Whew! That's a great relief AFAIC. Years ago my mother had a chunk of bowel removed for a different reason. I don't know how much was removed in her case because she & my father generally kept quiet about their ailments. I knew the diagnosis because she asked me to look it up for her, but I concluded she'd had surgery when I noticed later... along with other factors... that she seemed reluctant to venture far from her usual stomping grounds *where she was acquainted with various washrooms she could get to on short notice*.

I am glad to hear such difficulties are unlikely in your son's case, since the affected area is 12" or less. If I were in your shoes, however, I'd also want some margin for error and/or for caution on the surgeon's part. ;-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

Hi, Mark! Recently you wrote in a message to Ardith Hinton:

I have learned more about bowels than I ever thought
I would ever need to know.

As I did about pediatric leukemia 'way back when.... ;-)



[re my mother, after her surgery]

*where she was acquainted with various washrooms she could
get to on short notice*.

It seems to depend on what area of the bowel was removed.

Makes sense, now that I think about it. I just hadn't devoted much
thought to the subject because my mother never mentioned it once she'd asked me
to look up this strange condition the doctor told her she had. She'd carefully
written down the name... and she knew we had some medical reference books. But
for her that was an unusual degree of openness. I had to put the rest together
from my own personal observations after some time had gone by.... :-)

The descending colon is mainly for "storage". It doesn't
have much other function. Basically, you would have less
storage and would have to go more often, but the body
normally adjusts to this from what I understand.

Ah. My mother had Crohn's disease, which can occur anywhere in the
GI tract but is most often found higher up. That might explain a lot. She was
also getting on in years by then. In my experience kids... including kids with
DS... tend to be more adaptable than the vast majority of grownups I know. :-)

It is going to be stressful.

Yes, I'm sure....

I have checked with every pediatric surgeon in the state
and a few surrounding states. We have selected the most
recommended one around with lots of experience, so I just
have to trust his ability and knowledge.

Uh-huh. Sounds to me as if you're doing all the right things. :-)

Our main challenge right now is getting in touch with him
since he is very busy. It will certainly be incredible for
our son not to have to deal with the "work-around" that we
have in place right now to keep him well.

Yes, and probably for his parents too. :-)

The plan right now is for the operation to take place this
summer.

We may go camping briefly now & then, and even at the best of times
I may be slow to answer... but please be assured we haven't forgotten you. :-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

Hi, Mark! Recently you wrote in a message to Ardith Hinton:

My mother had Crohn's disease, which can occur anywhere in
the GI tract but is most often found higher up. That might
explain a lot. She was also getting on in years by then.
In my experience kids... including kids with DS... tend to
be more adaptable than the vast majority of grownups I know.

Yes, I know some people that have that condition. In some
cases they remove the entire colon if it is too damaged.

Since you reawakened my interest in the subject, I've also discovered
that further surgeries may be advised if the disease flares up again elsewhere.
I wonder now if what I observed in my mother's case involved a flareup. At the
time of the initial surgery I didn't see a significant change in her behaviour.
But some years later... when my father was in hospital & she depended on me for
assistance... her usual routines were disrupted. As a result I spent much more
time with her than usual, and noticed how well she was coping (or not).... :-/

It seems the area has not gone down enough in size and one
of the surgeons feels they would have to remove too much
bowel - where it would not give the best results. They
suggested a different procedure when they inject Botox to
relax the bowel to keep things flowing for now.

Relax the bowel?? I also have some doubt about this idea because the
average kid with DS has no problem with relaxing various muscles. It came as a
shock to me, as a mother, when I realized how stiff & tense other people's kids
seem to be by comparison. One of the endearing things about Nora as a baby was
that she'd quite happily adjust to the shape of the person holding her. And it
didn't occur to me until we lent one of her classmates a pair of boots that I'd
forgotten how to put boots on "normal" kids who don't know how to help me. :-)

We don't like the idea of going with an unproven method - that
still would require being put to sleep, so we have decided to
switch back to our original surgeon (whom has done an operation
on our son when he was born).

We want the best long term results for our son - and if that
means getting two operations, then that is what we have to
accept. The first one will be the "bypass" or ostomy. This
will be in place for probably 6 months to one year. Then the
second operation will be to "re-connect" the area and all
things should be good at that point.

It will take that long in between for the bowel to get back
to normal size when they can still use it.

Not exactly what we wanted to do - but we have to focus on
the best long term result.

As Dallas & I do with medical situations involving our daughter. :-)

We have done our homework and just about all
surgeons we talked to said the same thing.

Whew! I'm out of my depth here, but I like the idea that you've done
your homework. If the majority of surgeons you've consulted agree & you have a
surgeon available whom you already know & trust he may indeed be your best bet.

On the positive side, it should offer him some relief and
won't need the enemas every 3 days - which is not fun for
anyone involved.

Yeah, that's my take on it. Hang in there & keep in touch.... :-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

Hi, Mark! Awhile ago you wrote in a message to Ardith Hinton:

One of the endearing things about Nora as a baby was
that she'd quite happily adjust to the shape of the
person holding her. And it didn't occur to me until
we lent one of her classmates a pair of boots that
I'd forgotten how to put boots on "normal" kids who
don't know how to help me. :-)

Our son is also very flexible. He can bend in ways
that would make something in my body snap.

Likewise WRT how Nora often bends her ankles, especially the one she broke as the result of a fall when she was in her early teens. The orthopedic surgeon told us it was actually rather fortunate that her ankle bent until the knob collided with other bones on the same side because a broken ankle is much easier to fix & heals much more quickly than soft tissue damage... [wry grin].

After doing more thinking about the situation, we have
since decided to go back to our original surgeon (whom
performed the operation on our son when he was 1 day old).

About 3 weeks ago we had another contrast study and we
will be discussing the surgery with him this Tuesday.

IOW, you & your wife have agreed on taking this course of action. I think it's important that parents work together in such situations. While she may be chief breadwinner at present, her input is highly significant too. :-)

The good news is the area has gone down in size, but not
enough. He is going to need a temporary "redirection" for
around 6-8 months and then the final corrective surgery can
be done and all will be well.

We are all looking forward to that.. :)

Yes. You've done your homework & you have confidence in the doctor. If I understand the situation correctly you have time to be there for your son as well because (by some people's standards) you are underemployed at present. By my standards, the contribution you've been making as the father of this kid is a pearl beyond price. AFAIC there's no more important work even though you don't get paid in coin of the realm for doing it. If you truly believe you've made the right decision, that goes a long way. And as a nurse commented about another four-year-old in a book I read when Nora was about the same age... she didn't understand why she was in hospital, but accepted it because her Mom was with her. IMHO Bernie Siegel would approve. At any rate I certainly do. :-)

For those who tuned in years after Nora was diagnosed with leukemia, and I hastily packed a hospital suitcase, and I grabbed the library book which was on top of the pile on our window sill, and I finally got around to reading it after memorizing everything you never wanted to know about leukemia because oncology parents must pass a test on this stuff before their kid is discharged ... Bernie Siegel is an oncologist who wondered why some people survive cancer while others don't. When I read his book I realized I'd been doing exactly as he said (athough others thought I was crazy) & decided to do more of it. That was how this echo was born. Her Nibs is still alive & well, thankyou.... ;-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

Hi, Mark! Recently you wrote in a message to Ardith Hinton:

We have scheduled the first operation for November 1st.

Hang in there! Sending warm fuzzies.... :-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

Hi, Mark! Awhile ago you wrote in a message to Ardith Hinton:

I work full time (and have since I was 18 years old),

Ah. One wonders these days, considering the state of the economy. I
see middle-aged adults with good English working in fast-food joints where they
can be paid a "training wage" (less than minimum wage) for three months... then
laid off. It's rather nice as a customer to deal with these people after years
of trying to communicate with high school kids who have no idea what mayonnaise
is, e.g. It's not so nice for them if they're trying to support a family. :-/

but I am going to do is take FMLA leave for the
operations. I have almost 6 months worth saved
up from working so long where I am currently. I
am going to be off up to 2 1/2 weeks to be with
our son and make sure everything goes smooth.

Sounds good to me. I stayed with Nora while she was in hospital, and
although it was no picnic I think it was well worth the effort.

My wife doesn't have as much time since she just
started a new job.

... besides which, I understand that some employers get nervous about
whether a woman will fly the coop because she's pregnant and/or one of her kids
is sick. It's easier to get time off after you've been around for awhile. :-)

We have scheduled the first operation for November 1st.

I hope things went well there, but I realize you may still have a lot
on your plate right now....

... Bernie Siegel is an oncologist who wondered why
some people survive cancer while others don't. When
I read his book I realized I'd been doing exactly as
he said (athough others thought I was crazy) & decided
to do more of it. That was how this echo was born.
Her Nibs is still alive & well, thankyou.... ;-)

That is fantastic! There is never too much education/
knowledge and being there and a part of things every
step of the way is important. I'm really happy to hear
your story.

Thankyou. I see Bernie Siegel's work as applying to many situations,
not just to cancer. His work gave us the idea for the name of this echo... but
this echo is not about any particular medical condition. It's about how people
handle such matters, and I think you & I are on the same wavelength there. :-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)