Posted by Ola on 4/26/2008, 10:23 am, in reply to "Re: after repair: how many nights w/out sleep?"
18.56.2.98
Michael spent 2 nights at the hospital, one in the ICU, where he did not sleep practically at all and I ended up lying in his crib and wiping the bloody drool non-stop. The second night he was transferred to the surgical floor and slept one-two hours at a time. He had IV antibiotic and was fed through the tube, but still woke up. Also, the oxymeter did not pick up the signal properly (it showed sats in the 80's although M. was happily looking around, pink as usual) so the nurses were frantically running around and wanted to give him oxygen or bag him (luckily, one of them had the brilliant idea to readjust the probe first). My husband slept at home, so when we were discharged, he took care of Michael and I collapsed and slept for 4 hours during the day, which normally never happens to me. At home the first two nights were bad. The first night we were alone with him and none of us slept. The second night the nurse came, but I still did not sleep, because he was crying. We were giving him Tylenol with codeine every 8 hours by then. The next night he needed it only every 12 h, and the night after that we stopped. But he was massively disturbed byl lack of paci and the no-no's so my husband made hand protectors for him out of gloves sewn inside the balls made of plastic netting, sort of (we got one bofore at Babies'R'Us as a toy). This helped very much. He can bend his elbowas and can bite on the segments of the ball, but nothing gets beyond his gums. He still wears them at night. During the day we pay attention (he still tries to put his fingers in his mouth). Two weeks after surgery, and he sleeps very well. No pain at all and no discomfort caused by the palate. And he eats beautifully - we use the tube for two 150 ml boluses during the night and on Monday will start weaning also from this.
Sorry for the long response. To sum up, I would say that after a week everything should be more or less normal.
Ola
--Previous Message--
: Ha! Yes, the trach making a an open patent
: airway makes it a lot easier. And yup, I was
: very thankful for that feeding tube. Kate
: would probably STILL be in the hospital for
: not eating!!
:
: Hang in there, it'll be over before you know
: it!
: Angela
:
: --Previous Message--
: I have been dreaming of a feeding tube
: lately!
: I can imagine that helps things
: considerably. We are doing the motrin
: around the clock, maybe I will add tylenol
: too. And unfortunately he has already gone
: for his mouth so I think the no-nos are here
: to stay. I can't imagine wanting to touch
: the war zone Jack has going on in his mouth
: but I guess he is just really oral!
:
: At least we don't have to worry about the
: swelling effecting his breathing, there are
: times I am thankful for the trach!
:
:
:
: --Previous Message--
: Jennifer, I don't even know what to tell
: you.
: Kate had a feeding tube, so we gave her meds
: and food all through the night the first
: week or so, so no need for her to wake. It
: does take a bit for the anesthesia to wear
: off, and he will certainly be missing his
: paci by now. We found Kate didn't want to
: put anything anywhere near her mouth, so we
: took the no-nos off by the second night.
:
: And you're right, the recovery is more
: brutal than you think it will be. If it were
: me, I'd be keeping him on Motrin around the
: clock, for the comfort factor. As long as
: you stay ahead of the pain, and medicate
: before it gets out of control, I think he
: should be feeling better in a few days.
:
: Good luck!
: Angela
:
: --Previous Message--
: Jackson's repair was on Tuesday, it went
: well
: and he is doing well medically but I will
: admit recovery is tougher than I expected.
: Last night was the 4th night post surgery
: and his longest stretch of sleep was a few
: one hour blocks, but more typically he will
: sleep 30 minutes and then need to eat, get
: pain meds, or be jiggled back to sleep
: (plain old rocking is not vigorous enough to
: calm him down). He doesn't seem to be in
: too much pain during the day and takes a few
: short naps, so I think the night-waking is
: due to the lost bottle and lovey, and the
: no-nos. And I think I read anesthesia
: disrupts sleep. We have tried holding him
: in recliner or in our bed and he still wakes
: all the time, we would have to physically
: rock all night and maybe he would sleep
: longer. I think we are going to do this in
: shifts tonight.
:
: What I am wondering is, when does this get
: better??? I expected to be sleep deprived,
: but it is getting pretty grueling so I am
: just looking for a time frame, so I can
: focus on the light at the end of the tunnel.
: Does it take a week to break the habit of
: past crutches such as pacis and bottles; or
: are we talking the full 3 weeks he has the
: no-nos on? Or longer? No need to sugar coat
: it, I am just trying to get a goal for my
: own sanity.
:
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