Matthew is 18 months now and i last posted his sleep study reports bk in nov i think it was
well matthew had to stay in hosp from the 13th til 31st dec, he first went in on the 13th due to a apnoea in the day which he hardly has, he was kept in over night and discharged the nxt day
on the 15th matthew had a bad apnoea and i actaully needed to resusiate him
so he was kept in my hopsitla until a bed became available at Great Ormond Street Hospital in Lonodn on the Neurology ward


we was transferred up there on the 28th dec where matthew under went a number of tests, he had a 48 Hour EEG, Bulbar EMG, Sleep Study, MRI, Genetics review
the EEG was clear, they were looking for any signs of seizures which could cause the stopping breathing, the EMG was clear, MRI was also Clear, Sleep study showed a slight improvemnet from october study with less periodic bretahing and the Genetics test resuslts wont be bk for at least 6 motnhs
as well as its good news all matthew tests where clear, it still dont explain y he has this central apnoea and the hosp just hope he will outgrow it, so we have come home still not knowing if it will go or not

well we have been home 1 week now and matthew has had 39 Apnoeas alot of them he has self corrected but quite a few hes been blue and needed stimulation
i called matthew nurse and i now have to keep a diary of what times he has them, how long they last etc and report bk to her every couple of days

hes due bk at Great Ormond Street in 2-3 months to see the Respiraotry team then will see the Neuroligist i dont know if another sleep study willb repeated
the thing is becuase no cause can be found they cant treat his apnoea, they have said oxygen wouldnt help as hes stas very rarely drop below 90% on teh studies and medicine to help stimulate him wouldnt work either,

but when hes blue hes 02 must be at least in there 70's i was told, do u think if i asked for a home saturation monitor i would get it? becuase if i can see matthew sats dropping i can stop him getting into the point of going blue and get him out of that

i really dont know what to do im so tired and get no support really from anyone, even though matthew has a community nurse she hardly comes round and as u can imagine with 39 apnoeas since last sunday im shattered

if u was in my postion what would u do? since we have been home they have definaletly got worse, so shoud i just stick with the diary for now and ask for a saturation monitor which i think i wouldnt get
or keep bugging them, the thing is they have told me as long as matthew corrects himself there not bothered, its when he needs alot of stimulation and resus they r worried

thanks for reading and sorry it being so long
Natalie

Natalie,

This all must be awful. I'd even go so far as being appalled that they are moving so slowly and leaving this
all up to you (if I'm reading it right)  to keep an eye on him and stimulate him/resucitate. I'm sure you're
dead tired.

I would definitely ask for the monitor. Be persistent and point out that this is a life and death
situation. (ie, What if you had fallen asleep when he needs stimulation??)  
I'd be curious as the reason why not if they say no.
And by all means, don't hesitate to bug them if you're not happy with the way things are going.

I'm really praying for this to get easier quickly on you and your son.

Keep in touch.