I have been having a terrible of a time with my 3 year old daugher. She has always suffered form respitory infections/chest infections many times a year (esp the usual winter months) since she was a baby. She had another bad one a Christmas time and she was on oxygen for serval nights. When we were in the hospital the Consultant told us that he was refering us to ENT to have her seen as he felt that her oxyegn levels dropping so low were not so much to do with the respitory infection but were enhanced by it.
When we were seen at ENT dept. she was diagnosed with the Obstrutive Sleep Apnea and told that she would be put on the list as she was a prime candidate for surgery having her tonsils and adeniods removed and at the same time she would have grommits put in her ears as her hearing is not so good either. At that point we were told the surgery date would be roughly 18 weeks. We also got told we would need a sleep study done so they could put her under anaesthetic safely.
To cut a long story short since Christmas time her breathing at night is terrible. She stops breathing lots and lots of times a night and she goes very pale all around her lips and nose and her skin goes blotchy at which point i have to lift her and wake her up and then the colour comes back into her face and she falls back asleep and then it happens again..all night long. She also has very laboured breathing all night,"fights" with herself,screams,sweats and then she is shattered the next day , along with me!
The first time we found her pale we took her to out doctor and she got us admitted for observation. Her oxygen levels in the hospital that night were sitting around 89/90% and dropping to 78% at the lowest a lot of the time for up to 7 mins at a time. The nurse was practically in our room all night as the alarm went off every five/ten mins. We were sent home to wait for her date for her surgery and told to bring her back if she get worse or we were worried about her. We ended up back in a week later and the oxygen levels were much the same aagain and we then got told that we would be put on the "priority" list and it would be roughly10-12 weeks for that!!
We then got the sleep study done a few weeks ago and the results were just much the same as they had found the previous times when we were monitored in the hospital, it said that she continually went to below 80% and thats all we really were told apart form that they are going to need a High Dependancy bed for her after her operation, which will add to the waiting time no doubt!
My main worry is when to draw the line when it comes to her going pale/white round her mouth...the doctors seem to shrug this off...is that normal for a child with OSA to go pale like this??? I have to wake her up many times a night and i have been told NOT to let her sleep on her own...i quote form one doctor "she will always take a breath but just dont let her sleep in a room on her own at the moment...there is no need for me to sit over her though"...she obviously doesnt have kids!! Theres no way i would leave my child going pale white round her mouth and nose and just leave her like that! One doctor told me to keep taking her to the hospital and that will get her up the list but each time we have been in hospital she has cought some kind of bug (she gets everything that is going around!) and i dont want her to catch something for her date coming up then she wont be allowed her op!! That would be my luck!
Has anyone been in a situation like this and whats the best thing to do...i have tried re-positioning her instead of waking her up but it doesnt work. Also the doctors wont say if that this will all be over after her operation..i am hoping so, but what are the chances of her still having trouble??
Thanks for reading my post in advance!
Lyn x x