Posted by Jennifer H on 4/20/2008, 12:05 pm, in reply to "Re: update on Kate"
141.213.243.188
I just wanted to say that Karin's assessment of the situation regarding the various strong opinions on this board rings true to me. Our varying strong voices definitely stem from our unplanned roles as advocates for our children and our inability to know what "could have happened". Good luck Holly, we have been there.
--Previous Message--
: Hi, Holly. We're all thinking about you, and
: I sure hope the TLA is everything you need
: it to be. Unfortunately, there is a lot of
: disagreement about what is the right
: approach for these children in the medical
: field. One of the biggest jobs that we, as
: parents, have is to sort through the
: information and take our children along a
: path that makes sense to us. Sometimes,
: that means finding a new doctor, or
: sometimes a whole new team of doctors or a
: new hospital.
:
: It has been our experience that a lot of
: doctors want to treat these children like
: little statistics. What works for one is
: best for all. I'm not sure why that is the
: case, even at some of the best hospitals in
: the country, but what it has done is made a
: lot of us on this message board very vocal,
: and very forthright, about our opinions.
: We're all a bunch of fighters for our kids
: because we've had to be. Some of us have
: perpetual regrets that we didn't know enough
: at the time we let surgeons operate on our
: kids, and so we tell anyone that asks all
: that we wish we had known. And, since it is
: so emotional, a lot of us are very defensive
: about the choices we made (or allowed the
: doctors to make). Its too hard, as you
: might understand, to think that maybe if we
: had tried harder, or argued more, the result
: would have been different. So, there will
: be strong advocates for and against every
: procedure and every philosophy on this
: Board, and that is a good thing for all of
: us. It gives our kids the best
: opportunities because it makes us more
: informed parents.
:
: I hope and pray that you will become this
: Board's biggest and most vocal advocate of
: the TLA -- I really do, because I really
: hope that it works a miracle for Kate.
:
: The only advice that you simply must take is
: to get yourself comfortable with every
: decision you make, because you have to live
: with it. As a nurse, you already know this,
: but ASK, ASK, ASK. Don't accept an answer
: that doesn't make sense to you, even if it
: means finding another doctor or another
: hospital. Don't accept substandard care for
: your child, and don't EVER let the doctors
: shut you out or criticize you for being your
: child's advocate. I once let a doctor push
: me around and tell me my questions weren't
: fair, until two other doctors pulled me
: aside and told me that if it were THEIR
: child, they would have insisted on the same
: answers and that I shouldn't give up.
:
: We have a fabulous pediatrician that backs
: me up on each and every decision and helps
: me sort through the competing
: recommendations from the different
: specialists, and for that I am eternally
: grateful.
:
: So sorry for the long message, but we are
: glad you are here. Please keep us posted.
:
: --Previous Message--
: Well, we have been in the picu since monday
: night. They have been observing Kate and her
: airway problems. It has been decided that
: it is time to do something. We have weighed
: all of our options and have decided to try
: the TLA. It was hard to come to a decision
: on this as you guys all well know. Nobody
: seems to agree on what is the best way to
: "treat" the airway obstruction in
: these cases. Not even doctors and people
: that research can. Being a nurse I think
: makes this even tougher. I am well aware of
: all the risks involved in surgery and in
: trach placement. We decided to try the TLA
: first. I have talked with other parents
: that it worked great for their kids. I am
: hoping that this works for Kate too, but i
: know there is a chance it will not. I am
: going to take it one step at a time. Kate
: has no feeding issues at this point, and I
: am hoping that none of the interventions
: that we might have to take will affect that.
: A lot of people that responded to my first
: post were not optimistic at all about the
: surgery, so it was very tough to come to the
: decision. I don't want her to end up with a
: trach, but I know that it may come to that.
: I guess that it is the nurse in me....i have
: seen first hand the complications/infections
: and so forth in kids with trachs although
: none that i have seen with prs. I am praying
: so hard for my baby...pray for us also. I
: will keep you guys updated on the
: progress....Holly and Kate
:
:
:
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