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Original poster

dd1 has sleep apnea , and surgery next week . Im trying to be ok ,really I am !!!

16 replies

melsy · 30/11/2007 21:22

Its only routine adenotonsillecotomy and I really want to be strong and positive. Its the fact that she has to have oxygen after as they said it may be worse before it gets better. Her surgery is on Wednesday so at least we haven't got to wait to long , as they didnt want to leave it any longer. The sleep apnea puts great stress on the heart long term and already has been giving her a very rapid heart rate even at rest. She also has an iron deficiency which hasnt helped with appetite or energy levels.

What a roller coaster few months , I dont know if anyone's kept up with whats been going on in our little family , but finally we have got answers at Great Ormond st the last couple of weeks as to why dd has been so altered in her behaviour. It is such a relief , but its also been a very worrying time and we have this last mountain to get over. Im working hard to stay positive and strong for both of us , but its takes some resolve. Even writing this is making me get a lump in my throat, but Im not going to do sad faces , as I need to concentrate on being ok , it seems silly as its all routine , but its the whole GA that freaks me out .

Anyone who is around, (& may be has read all my warbling of late), I just need a little hand holding or some egging on from the sidlines!!!

OP posts:
ItsBeehindYou · 30/11/2007 21:52

i haven't read any of your other threads but it is OK to be wobbly and even scared. I'm sure someone will be along soon who has had a similair experience. I had to take my DD to hospital this week and again next week for what are probably piddling little nonsense things and I was/am very nervous so I can only imagine how you feel.

You spotted something was wrong with your DD and stuck with it until you got an answer from the medics. You're a good mum.

I'm wittering aren't I?

Good luck to you both.

natalies1982 · 30/11/2007 22:07

my son has sleep apnoea but has central not obstructive and we r under the respiratory team at GOSH also who also diagnosed my son when our local couldnt

good luck for the op, is the op being done at GOSH or local hopsital?

Original poster
melsy · 30/11/2007 22:21

thank you ItsBeehindYou , Its taken it out of me really , weve been all over the place with her and no one was putting all of it together till now. I dont know how , but I had a hunch that she had sleep apnea , and then it was confirmed a couple of weeks ago.

natalies , yes its being done at Great Ormond st, we are very very lucky to have been covered by insurance, so were in the private wing , which is amazing , dd was taken around on Thursday. The ENT surgeon said that it wouldnt have been done in a local hospital due to what it had caused and the fact that she has a heart murmur(although benign thank gawwwd).

I dont know much about central sa, how does that affect him?

OP posts:
saggarmakersbottomknocker · 30/11/2007 22:32

melsy - my ds2 had sleep apnoea due to tonsils. He had surgery shortly after he turned 3. It was never offically dx'd as that but the ENT said he was as sure as he could be without the sleep study. He slept so poorly at night and fell asleep at the drop of a hat during the day - and the night terrors he had - ENT said were related to the adrenalin they produce to 'restart' the breathing. We were quite on the ball with him as ds1 had had adenotonsilectomy at the same age so I knew the signs.

ds2's behaviour was a massive problem prior to his surgery and we were on the verge of him being assessed for ASD. He was a different child afterwards.

I'm sure things will be just fine for dd - she's certainly in safe hands. Sending them off for a GA is always hard but it's us mums who suffer more. Will you have someone with you on the day?

natalies1982 · 30/11/2007 22:36

CSA is bascially hes brain forgets to tell him to breathe, so he has frequent apnoeas, 1st study he had done at GOSH showed 285 apnoeas. hes on a apnoea alarm which goes off nightly and gets worse when hes ill, hes needed to be resusitated twice due to stopping breathing he was diagnosed at 14 months and is now 3 years 4 months

GOSH have been fab, we r up there again monday for the day to have more tests done, not related to his apnoeas though he also has other probs.

ive seen pics of the new wing and it looks fab hope the op goes well

saggarmakersbottomknocker · 30/11/2007 22:39

Nat - is that similar to Ondine's Curse? I remember a little girl having that when dd was in hospital. She fell asleep having her tea on the ward and had to be resusitated as she stopped breathing. Very scary.

Original poster
melsy · 30/11/2007 22:48

Sagger thats good to know , Ive been told she will be a changed child soon after. Or rather a changed back child , its been like someone else possessed my dd1!!!

She used to hoover down food as a baby and young toddler ,this past few months she just picks at it and spreads it all over the table !!!. Weve been finding her in all sorts of weird positions at night, with her head under her bed or half way across the room asleep!!!She often wakes also with night terros and crying or we think shes awake go in and check and shes out of it, which is realy freaky. We havent been able to get her dry at night as she soaks her nappies so much which is another sign. She tends to lollop all over the place mornings and evenings and looks so drawn.

Im so looking forward to my little girl coming back.

OP posts:
Original poster
melsy · 30/11/2007 22:50

That must be very hard natalie, what is the long term treatment for it ? What keeps you in the calm place with it all ???

Do you live far from there? We need to leave at least 2hrs to get there park and get in on time.

OP posts:
saggarmakersbottomknocker · 30/11/2007 22:54

melsy - I'm sure you'll see a change in her What day are you going in - will be thinking of you.

1dilemma · 30/11/2007 22:59

oh guys if you're going to GOSH go and have a look in the chapel if you get the chance it'a a lovely place even if you're not religious and will probably have a great big Christmas tree in it. It's on the ground floor (I think it used to be on the first floor and they moved it downstairs!!!! it's listed )

1dilemma · 30/11/2007 23:00

Good luck with the surgery

Original poster
melsy · 30/11/2007 23:15

Its wednesday sagger, thank you for your thoughts. I feel like Ive lived in hospitals all year ! Its really tested my recovery from ptsd !!!!!

Thanks for the tip 1dilemma, will see if we can.

OP posts:
natalies1982 · 01/12/2007 11:03

we done some researh b4 he was diagnosed and ondines curse is what came up, but its a totally diff thing. although is similar, he was tested to see if he had a genetic disorder called CCHS but this was clear. hes had every neurological test under the sun to find out y he has it but they just dont know, the type he has is very common in very prem babies becuase the central drive in there brain is not fully developed.

it was hard at 1st but weve been dealing with it for so long now we r use to it, its scarey when he has the long apnoeas and u see the colour drain from his face from pink to blue.

they have discussed caffine to give to him, but that will cause iyts own probs, so they just monitor it, last few sleep studys have shown the same so its not got worse so its just 3 monthly appointments, sleep studies every 4-6 months.

we live in essex last time took us 3 hours to drive, on monday we r having to leave at 7am to get there by 10ish to get chest xray done b4 his app at 11 im dreading it.

where do u live?
good luck for wed what time u got to b there for?

lumpasmelly · 13/11/2008 13:38

Took my son to a pediatrician yesterday because of the fact that he was doing this weird breathing thing in the day (i.e. looked like he was strggling to breath) and was expecting to be told he might have asthma or that it was a tic - was quite shocked when he pointed out DS1s enlarged tonsils and said he suspected sleep apnea. It all makes sense now as he has always snored very loudly, suffers from night terrors and has recently been really cranky despite having "slept" all night. Seeing the ENT specialist at Harley street next week so we will hopefully get confirmation one way or another - very scary for him to have an operation to remove the tonsils as he is only 4, but at the same time, I can see how much this is affecting him and it will only get worse if we don't do something about it. Still a bit shocked though, as it never really crossed my mind that this was the problem....I feel really bad as I initially thought he was doing the odd breathing thing to get attention (as the GP had originally told me to "ignore it")!!!

lumpasmelly · 13/11/2008 13:39

Took my son to a pediatrician yesterday because of the fact that he was doing this weird breathing thing in the day (i.e. looked like he was strggling to breath) and was expecting to be told he might have asthma or that it was a tic - was quite shocked when he pointed out DS1s enlarged tonsils and said he suspected sleep apnea. It all makes sense now as he has always snored very loudly, suffers from night terrors and has recently been really cranky despite having "slept" all night. Seeing the ENT specialist at Harley street next week so we will hopefully get confirmation one way or another - very scary for him to have an operation to remove the tonsils as he is only 4, but at the same time, I can see how much this is affecting him and it will only get worse if we don't do something about it. Still a bit shocked though, as it never really crossed my mind that this was the problem....I feel really bad as I initially thought he was doing the odd breathing thing to get attention (as the GP had originally told me to "ignore it")!!!

princesspeahead · 13/11/2008 13:49

melsy my ds2 had sleep apnoea and then adenoids/tonsils/grommits done all at once when he was 3.5. Honestly - it is the BEST THING. Watching them sleep peacefully without a sound afterwards - ahhhhhhh what a relief. Other benefits - he had 40dB hearing loss in each ear because of the crud that had built up because his adenoids were so large. Afterwards - perfect hearing. He was a small eater, basically because he found it so difficult to swallow. Afterwards - grew about 2 inches in 6 months and rediscovered eating. His speech wasn't great - mixture of hearing and throat problems I guess. Afterwards - came on in leaps and bounds. He was pale and tired before - pink and full of energy afterwards. Honestly, it was fabulous.

Re the actual op - removing the adenoids is the painful bit I think. He was OK on day 1 (the day after), then not v good on day two, then worse on day 3 (in terms of pain and not eating etc). He was at the rock bottom on day 5 (ate one creme caramel all day) and just as I was really worried he bounced back on day 6, and was absolutely fine on day 7. So give him all tha pain meds that they recommend, expect a bit of a dip a few days in (I think as the area scabs over it gets more painful not less), stock up on yoghurts, ice lollies, creme caramel, anything that slips down, and prepare for a new and improved little girl afterwards! Best of luck. x

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