Posted by Susie
on 12/6/2008, 6:38 pm, in reply to "Re: Big Day Today"
71.187.34.140
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.
:
:
:
:
:
:
:
Message Thread:
« Back to thread