Posted by Laurie
on 12/10/2008, 1:08 pm, in reply to "Re: Big Day Today"
68.37.25.8
Every doc is a little different, but he has to have them on for approx. 3 weeks - he goes back for a post op visit on Dec. 22nd and if he gets the all clear then, they come off! Just in time for Christms 
--Previous Message--
: How long does he have to wear the restraints?
: I haven't asked the question yet.
:
: --Previous Message--
: Sorry to hear you're having troubles, but
: glad
: are not discharging him until he is ready.
: The "good" news is that by the
: time you get home, his pain from the surgery
: will pretty much be gone. Please let us
: know when he improves.
:
: We are doing great at home. No pain meds
: since yesterday and other than being more
: tired than usual and off schedule a bit (and
: really, really mad that he can't have
: goldfish crackers!) he is back to his normal
: self. Can't wait for the arm restraints to
: come off though
:
: --Previous Message--
: Hi Laurie - thanks for checking in. Still
: in
: the hospital. Out of PICU but still on
: oxygen. His breathing seems to improve then
: get worse. He desats once or twice a night,
: they reposition him and it gets better. His
: respiratory rate is up to 50-60. I am
: frustrated because no one is explaining to
: me why this is happening. Is it normal
: postop reaction for a small child under
: anaesthesia for 6 hours or what?
: Pulmonology is there today checking him out.
: They won't discharge him until he is on
: room air for 24 hrs so I feel good that they
: won't kick him out too early.
:
: How goes it at home?
:
: Susie
:
: --Previous Message--
: Susie how is your son doing?
:
: --Previous Message--
: Susie - we got discharged yesterday at 11:00
: AM and are now home and he is doing very
: well.
:
: I am sorry to hear your little guy is having
: a rough time, and YES, it is exhausting, all
: of this. Once you are out of the hospital
: it will be easier but hospitals are so tough
: b/c someone is always coming in every few
: minutes it seems to check this or given him
: that and it is so hard for anyone to rest!
:
: Please keep us updated - it gets easier
: every day
:
: --Previous Message--
: The docs were not able to extubate until 48
: hrs after surgery. He did get off the cpap
: today as his tongue is a lot less swollen
: and his sats are OK. His tongue is still
: pretty big though. Our big hurdle is going
: to be feeding him through the tube (his
: usual way of eating) and seeing if he
: refluxes and if he can vomit with his tongue
: the way it is. So we went in Wednesday and
: I am not sure when we will get out. Maybe
: Tuesday.
:
: That is very exciting about Connor eating!
: Any little development feels very good.
:
: Don't know about you Laurie or any of the
: other parents out there but this is really
: wearing on me. I am really tired all the
: time. It must be the stress working on my
: system.
: --Previous Message--
: Congrats to you Susie - doesn't it feel good
: to have the surgery over with? Now the
: recovery...another hurdle, I know. The docs
: told me they might leave the breating tube
: in if he was having any problems, but he was
: ok and didn't need it, but they made it
: sound like it was relatively routine. How
: is he doing now? Is the tube still in? Did
: they say when it can come out?
:
: Is your son drinking fluids yet? If so, how
: well? He went in for surgery at 2 PM and
: came out around 6 PM. He slept and wanted
: nothing near his mouth the first night.
:
: The next morning he drank one ounce of apple
: juice/water mix with his Dr. Brown bottle
: (cross cut nupple) and we were so excited!
: Well, after that one ounce Thursday morning,
: he wouldn't go near anything else the rest
: of the day and has been on IV fluids most of
: the time to keep him hydrated. We tried Dr.
: Brown nipple, Haberman, sippy cup, regular
: cup - nothing worked. Dr. said he just
: wasn't ready and not to worry.
:
: Today (Friday) he actually ate 2 containers
: of stage 2 Gerber baby food around 2:00 or
: 3:00 PM and then drank 6 ounces of a
: strawberry banana fruit smoothie drink!! We
: thought - yay - this is it - he's going to
: start drinking and we can go home soon!!!
: But....it's now 8:20 and he's asleep and
: would not drink anything more since that 6
: ounce triumph.
:
: Any suggestions???? Tomorrow will be our 4th
: day here and we all REALLY want to go home
: but he has to be drinking enough to be
: discharged. I don't think I can last another
: day in the hospital.
:
:
: --Previous Message--
: Hi Laurie - my son Charlie had his done
: yesterday at Columbia Presbyterian in NY.
: The op went well but he is very swollen.
: They left the breathing tube in and are
: waiting for the swelling to go down. Has
: anyone had this experience? He is 30 hours
: post op at this point.
:
: Laurie, glad to hear your son's surgery went
: well!
:
: Susie
:
: --Previous Message--
: Best of luck to you!! My daughter Kate's
: cleft
: was repaired at CHOP in Dec 07.She was 14
: mos as well. Love them!!
:
: Angela
:
: --Previous Message--
: Today my 14 1/2 month-old son, Connor
: (SS/PRS), will have his cleft palate
: repaired...very excited and nervous at the
: same time. Sort of a big catharsis for me,
: since I too have SS and was born with PRS,
: but had no idea about the SS until he was
: born.
:
: We arrive at CHOP at noon today (yes, he is
: already starving!) and I pray that all goes
: well. I feel well prepared because of
: everything I have read on this board.
:
: I'll post later after his surgery with an
: update.
:
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