Posted by Susie on 4/18/2008, 10:04 am, in reply to "update on Kate"
206.230.48.50
Holly - best of luck to you and Kate. In my short experience, one of the more difficult things about dealing with PRS is that no two cases are alike. What works for one kid may not work for another. I put up a question not too long ago about a g-tube placement for my son and many people did not recommend it. But I made the decision to go ahead with it after talking to more people and I am so happy we did it. Charlie is doing very well and is much happier these days. Bottom line is that the support group is terrific, people have lots of good ideas and advice, but at the end of the day you have to do what you think is best for your child. Keep us posted. Susie
--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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