[ Post a Response | 22q Deletion Interest Board ]
Posted by liz On a different note, I saw you said Australia. My oldest has just been selected to the People to People student ambassador program and will be spending time in Sydney next summer. She also gets to visit New Zealand and Fiji. What part of Austrailia are you in? Thanks for responding and letting me ask what seems to me endless questions. I appreciate the answers and the patience. Liz --Previous Message--
on 11/5/2005, 10:00 am, in reply to "Re: confused"
65.25.17.231
Hi Melonie,
After doing some more looking around I was persauded that even though she saw a cardiologist at 2 weeks, that with the possibility of the C22 that maybe we have another EKG and/or Cardio ultrasound done just to make sure her murmurs ( was told she had 3 ) were just that and nothing more before going into surgery. She is scheduled for surgery on the 6th of Dec and they will be doing the tubes. When I asked if we could wait and try another option for the fluid I was told that since all are linked in some way that the fluid is not going away without them. Which I am ok with. But I wander in thought here...lol. I went ahead and moved her genetic appointment to the 14th now instead of the 30th. That way I can ask them about the cardiac testing. My thinking is if I can get the least scary things done before surgery then maybe getting her back into a doctors office won't be so hard. I hope. My oldest daughter had sleep apnea as an infant. I know the sleepless nights that go along with that. I was told that her snoring may become louder after this. Did Connor snore prior or after the surgery did it appear to get worse?
: hi liz,
: With the ear tubes i beleive they do
: their job. Connor had failed 3 tests
: before they went in and passed the
: one after, it is only a minor
: operation, in and out in a day. With
: the IGA definately ask about it, my
: ENT only stumbled across that as
: part of a study the university were
: doing (he is the prof.) I dont think
: the genetics tested for that one.
: As far as the palate operation goes,
: it was hard to see him go through
: that!! We had a pharygoplasty done
: (closing the airway to nose) and z
: plasty ( sub-mucous cleft repair) so
: i think it was a little harder than
: if he had one of those things done!
: He had a tube down his nose which
: was for oxygen for first 24 hours
: and they had to suction it hourly to
: get the blood out. The hardest part
: for Connor was in recovery he was
: highly sensitive to morphine and had
: some narcain and was watched very
: closely for hours. I had a great
: team at the hospital i was at! The
: best in Australia! The first 3 days
: were pretty bad for us he just had
: tiny little sips of things, but when
: we got him home to his brothers he
: wanted to eat everything he seen. He
: missed them terribly at hospital. If
: your daughter has speech or
: swallowing difficulties then i think
: it worth a try to give them the
: opportunity to communicate!
: We had our post op follow up today
: and we are going sleep studies as
: they think connor may have developed
: sleep apnea.
: I was already a walking Zombie i
: havent slept all night now, the sun
: is coming up!!!!!!! Im sure you have
: had nights like this.
: I hope i answered your questions, if
: you have any more dont hesitate to
: email me.
: Goodluck with your upcoming
: appointments.
:
: melonie
:
Message Thread:
« Back to thread