• Later this month.

    From Mark Hofmann@1:261/1304 to All on Wed Jan 11 20:29:16 2012

    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.

    The procedure will involve a large abdomen incision. Removal of the descending bowel that has no nerve cells and then redirecting the remaining bowel to his bottom. As part of this, they plan to remove his appendix - since
    it will be in the wrong place after this is completed.

    The end result is to have him being able to have normal bowel function with no intervention.

    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.

    - Mark

    --- WWIVToss v.1.50
    * Origin: http://www.weather-station.org * Bel Air, MD -USA (1:261/1304.0)
  • From Dallas Hinton@1:153/7715 to Mark Hofmann on Wed Jan 11 23:25:26 2012
    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)
  • From Ardith Hinton@1:153/716 to Mark Hofmann on Mon Jan 30 23:42:04 2012
    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)
  • From Mark Hofmann@1:261/1304 to Ardith Hinton on Sat Feb 4 22:46:10 2012


    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.... :-)

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

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

    - Mark

    --- WWIVToss v.1.50
    * Origin: http://www.weather-station.org * Bel Air, MD -USA (1:261/1304.0)
  • From Mark Hofmann@1:261/1304 to Ardith Hinton on Tue Feb 7 14:49:57 2012


    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. :-)

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

    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.

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

    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.

    - Mark

    --- WWIVToss v.1.50
    * Origin: http://www.weather-station.org * Bel Air, MD -USA (1:261/1304.0)
  • From Ardith Hinton@1:153/716 to Mark Hofmann on Wed Mar 21 23:26:05 2012
    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)
  • From Mark Hofmann@1:261/1304 to Ardith Hinton on Mon Apr 2 18:24:55 2012


    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.

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

    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.

    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.

    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)

    - Mark

    --- WWIVToss v.1.50
    * Origin: http://www.weather-station.org * Bel Air, MD -USA (1:261/1304.0)
  • From Ardith Hinton@1:153/716 to Mark Hofmann on Wed Apr 25 23:56:59 2012
    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)
  • From Mark Hofmann@1:261/1304 to Ardith Hinton on Thu Apr 26 13:58:12 2012


    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].

    Yes. Very true.

    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.... ;-)

    Good to know. :)

    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.... :-)

    Yes, that is exactly right.

    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.

    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.

    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. :-)

    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.

    The less that needs to be removed, the better the long term success. 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. My personal goal for him would be no more than 8" (since 6" is a given).

    - Mark

    --- WWIVToss v.1.50
    * Origin: http://www.weather-station.org * Bel Air, MD -USA (1:261/1304.0)
  • From Ardith Hinton@1:153/716 to Mark Hofmann on Mon Jun 4 23:56:11 2012
    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)
  • From Mark Hofmann@1:261/1304 to Ardith Hinton on Sat Jun 9 17:59:16 2012


    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. :-)

    Sadly, the Ganglion cells are formed and migrate while in the very early stages
    of development in the womb. It would be nice if they would migrate down that this point, but that isn't something that happens unfortunately.

    They call the area with no Ganglion cells "non-functional bowel".

    I see you're well informed about your son's condition & I heartily
    approve. :-)

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

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

    Yes - but we are told the hospital stay is typically no longer than 5 days.

    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*.

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

    We really don't have any other option, because enemas every 3 days isn't a good
    option.

    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. ;-)

    It is going to be stressful. 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.

    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.

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

    - Mark

    --- WWIVToss v.1.50
    * Origin: http://www.weather-station.org * Bel Air, MD -USA (1:261/1304.0)
  • From Ardith Hinton@1:153/716 to Mark Hofmann on Tue Jul 3 23:46:38 2012
    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)
  • From Mark Hofmann@1:261/1304 to Ardith Hinton on Thu Jul 12 07:37:51 2012


    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. :-)

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

    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. :-)

    We do have an update on things. 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.

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

    We have an appointment August 7th to discuss the entire thing with the surgeon and things will probably take off soon afterwards. 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.

    - Mark

    --- WWIVToss v.1.50
    * Origin: http://www.weather-station.org * Bel Air, MD -USA (1:261/1304.0)
  • From Ardith Hinton@1:153/716 to Mark Hofmann on Tue Aug 21 23:20:36 2012
    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)
  • From Ardith Hinton@1:153/716 to Mark Hofmann on Wed Oct 3 23:56:09 2012
    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)
  • From Mark Hofmann@1:261/1304 to Ardith Hinton on Mon Oct 15 12:52:03 2012


    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. :-)

    I work full time (and have since I was 18 years old), 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. My wife doesn't have as much time since she just started a new job.

    We have scheduled the first operation for November 1st. He will be in the hospital around 3 days after the operation. The first one is the diversion of the bowel - only. This is needed to get the "parts below" to go down to a normal size.

    The second one will take place in the May-July time-frame will put things back and fix the issue.

    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.... ;-)

    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.

    - Mark

    --- WWIVToss v.1.50
    * Origin: http://www.weather-station.org * Bel Air, MD -USA (1:261/1304.0)
  • From Ardith Hinton@1:153/716 to Mark Hofmann on Thu Nov 1 00:20:38 2012
    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)
  • From Mark Hofmann@1:261/1304 to Ardith Hinton on Fri Nov 2 10:49:17 2012


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


    Thanks for the warm fuzzies!

    I am posting right now from the hospital room. Everything went as planned yesterday and he is resting. This afternoon he should be starting on clear liquids and then back to food again.

    We all can't wait to go home, which hopefully will be this Saturday.

    - Mark

    --- WWIVToss v.1.50
    * Origin: http://www.weather-station.org * Bel Air, MD -USA (1:261/1304.0)