As a mother, I will be very frank with you. I would absolutely NOT take "no" for answer when it comes to some sort of monitoring or even a stabilizing unit at home.  If they can't help her at the hospital with all their fancy doodads, then what do they expect you to do at home when you can't even tell what her oxygen levels are?

I would do this: I would contact your GP. Tell him what happened overnight at the hospital. Inform him that you need to have, at the very least, an oxygen monitor at home for the sleeping hours. I would probably insist on having an oxygen mask or one of those machines they use for obstructive apnea. I don't know what all they are called, we don't use one.

I say this all the time...As parents, you know your child better than anyone else does and if you truly believe her to be in danger, then do something about it. If your regular doc isn't being helpful, find a new one. If that's not an option, then take her to the ER everytime her lips turn white. Someone is going to pay attention sooner or later. This all seems rather negligent to me...

Best of luck..I would be interested to see what some other parent's thoughts are on this one!!!

Tiffany

Hi Tiffany,

Thanks again for geting back to me...i am glad i am not hte only one who would not accept this.

I took her back into the local hospitals Chilrens Ward last night again....and i am going to keep doing so untill we get either her surgery or sopme help at home with this. I spoke to a great docotr who believes her surgery should be done asap and that i need but unfortuatnlry her operation needs done at the Sick Kids hospital which is in Edinburgh (Scotland) so he can only push it for us and he said he was goin to make the case really strong for us. He must have done something right because we came home again today and within 3 hours we got a call from the ENT consultant at the hospital she will get her op, she said she was putting her on the emergancy list and will have us in when she can to get her op done. She is going to arrange a bed on the high dependancy ward for after the surgery too. I told her my worries at home and she was very understanting. She said that anytime we are worried about her and she goes pale in the face to take her straight up to the ward to get her monitored. She said hte more we take her the more she will be able to push to get her operation done. She is going to get a date to us as soon as she can.

I feel a bit more happy with this but i am still going to get her checked out every thime i think her oxygen levels are low...i dont care if they think i am a pushy, over protective mum, thats our job as parents!!

Thanks very much for your help and advice, its much appreaciated!
Lyn x

Hi, Lyn,

Sorry my reply comes late after you have taken your daughter back, but congrats to you!!! Welcome to the world of advocacy aka Pushy Mothers (and some Fathers) Club.    

Unfortunately in this world of overbooked patients and overstuffed schedules, the parent has to straddle a fence of polite diplomacy and aggressive pushiness. Having two children with special needs, I am still learning how far to lean to which side when.

I don't want this to sound hard, but I am going to tell you something I had to learn. Your little one only has one life and it was entrusted to your care. Please never feel like a bother when you are advocating for that life. Sleep deprivation and oxygen deprivation is not something to be taken lightly. I simply am appalled at the lack of concern so many other drs had before this wonderful one finaly took you seriously. But I understand your frustration. Because you showed heightened concern, someone else did. I wish it wasn't this way, but having just spent two days in meetings at school and meetings at transitioning coordinators offices, I am just ramping down from my "this is my only chance to make a difference" mode.

I am so glad that it is working better now, and your little one will be in our prayers tonight. I am glad she has parents that are willing to be seen as pushy for her sake.

Take care,

Judi