Posted by Nicole on 4/21/2008, 9:59 am, in reply to "update on Kate"
69.131.74.114
HI Holly,
I'm not sure if you read my first post but my daughter had the tongue lip adhesion and did fine with it. They kept her tongue lip adhesion in place until she was one then repaired her palate and took down the tongue lip at the same time. She has had no residual effects from the TLA and I would choose to do it all over again. Her speech has not at all been impacted by the TLA. I do want to let you know that it took about 1 1/2 weeks for the swelling to resolve from the TLA so she did have some desats during that time but after that she was in the clear so don't panic if you see some initial desats. I'm a nurse as well so I know how we pay attention to monitors.
Best wishes.
Nicole
--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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