Posted by Karin on 4/19/2008, 8:20 am, in reply to "update on Kate"
98.169.41.125
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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