Sleep study results

Published March 20, 2012 by swanfreddie

Today has been fairly hectic! We started off with an appointment with the respiratory doctor in Alder Hey. Freddie had a sleep study a few weeks back & we were due to get the results. We had noticed pauses in Freddie breathing when asleep & it had also been noticed by a doctor during one of Freddies hospital stays. We were expecting the study to pick up maybe one or two pauses but we weren’t prepared to be told there were 28! The 28 weren’t through a whole nights sleep but just a few hours. Also they noticed when he was breathing he was struggling alot & he was having to work very hard to breath.
Freddie has a trigonacephaly (premature fusion of the metopic suture leading to a triangular shaped forehead) so is being monitored by the craniofacial team in Alder Hey. They have spoken to us about the possibility of operating on his skull(it’s a very horrible, full day operation which involves removing his skull & taking it all apart & rebuilding.) The results of this sleep study may further the need to do this operation. The respiratory doctor is going to be holding a meeting with the ENT doctors & the craniofacial team to discuss the sleep study results & see what the best route for Freddie will be.
Straight after that appointment we had to head to our next app of the day over in Chester to see our Paediatrician. We have just changed to a new paediatrician &  he seemed very nice. We told him that over the past few days Freddies epilepsy seems to have returned. It was decided that his medicines needed to be upped. His Epilim has gone up to 6ml twice a day & his clobazam up to 2ml twice a day. We just have to be careful that it doesn’t make Freddie too sleepy. Most of his other meds were upped to try & help control his reflux & dribbling a bit better.
Freddie is exhausted after today so i’ve just put him to bed. I felt horrible closing the door on him knowing he will stop breathing tonight in his sleep. I’m scared that he might just stop & not start again. The respiratory doctor assured me this would be very unlikely but it’s hard to not worry. Hes my baby after all.

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7 comments on “Sleep study results

  • Oh lovely, so scary, have they given him apnea mask or does he already have, my hubby has one as he stops breathing 10/12 times a night, not as awful as Freddie obviously, have they said whether the op would put a stop to thses issues.
    Just breathe lovely, I know there is nothing I can say to make it go away, but you will get through as we have to, thats our lives, just focus on Freddie xxx

  • Awwwww Darlin.

    River stops breating to at night, its awful, so i can feel for you.

    I have a breathing moniter on under Rivers mattess by Angel care. It clicks as he breathes, so i know he is okay. im going to put a video clip on my facebook wall soon to show his breathing when sleeps. on our sleep study at one point he has obstrutive breathing for 16 seconds and central apnea for 12 secs.

    i hope you are ok, bey yor so worrid about the op. xxxx Thinking of you and freddie xxxx

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