Posted by Angela on 3/22/2008, 7:10 am, in reply to "Re: my daughter's pierre robin"
72.76.37.40
When Kate had her TLA she was ventilated and in a medically indued coma for 4 days. It's not pretty or fun to watch. What killed me the most was watching her chest go up and down in that mecahnical way a vent facilitates. Be prepared for that, plus the drugs they give to keep her medicated (and I assume she'll be knocked out) will make her body retain fluid, so she'll be puffy and look very pale.
It's hard for sure, but try and remember it's for the greater good. If the distraction is successful, you can move on to getting her to eat by mouth and then home. It sounds cliche, but you have to keep your eye on the prize here.
What hospital is she in??
Angela
--Previous Message--
: She will have the jaw destraction, using a
: device htat they turn each day for two weeks
: . She will have to be in a ventalitor for
: ten days and on heavy pain medication. Then
: she will have to be ably to eat well before
: she goes home. How did you handle this? The
: stress and worry and sitting at the hospital
: each day is killing me.
:
: --Previous Message--
: Which surgery will she have?
: My son had the TLA, trach and G-tube put in
: at 7 weeks old. I was in panic. Now he is 7
: months, he is an extremely active, cheerful,
: sociable boy, will have the palate repair in
: 3 weeks and the tubes will go away hopefully
: soon after.
: I am sure that your daughter will get
: better. Pierre Robin kids need time (som
: more, some less), but they are every bit as
: great as regular kids.
: All the best
: Ola
:
: --Previous Message--
: So I am terrfied, my daughter has a life
: threatening case of pierre robin, she will
: need surgery this week and she is only a
: month old. Can anyone talk with me about how
: to handle this, how long does it take for
: her recovery and help me with this?
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