Feeling really stressed about decisions I have to make for DD. Need to focus on something but what?

[used2bthin]

It is about whether she needs an operation now or whether to wait, it has to be done, long story lots of pros and cons. The surgeon wants to see us as soon as she is back (she is away) I think she is back now so am waiting for an email to arrange a meeting. I find it hard to think of anything else. DD has a hearing test tomorrow and it has barely registered so I hope it goes ok as don't know how I will be otherwise.

What I am most scared of is complications with the surgery and worst case type scenarios. She has done so well recently with speech and confidence and this may knock her right back. It is just so unfair on her. And the thought that I have chosen all this pain to be now rather before she fully understands is .

Anyway any tips for coping with the waiting game? I should be an expert by now she is hardly a newcomer to anaesthetic or nasty procedures but this will be quite major. It is the evenings I struggle with, end up comfort eating or obsessing over other stuff or just feeling hopeless over this.

Oops wht I meant about the focussing was that at least when I know the plan and if it is soon I can throw myself into organising and getting everything she needs. Feel sick thinking about handing her over again though.

I've not got any experience of medical procedures etc but didn't want you to go unanswered. I know when my worries about DS and his language were at my worst I had to force myself to allow myself time not brooding about the issue. Is there anything you enjoy doing that you can distract yourself with a bit? As it's so easy to put ourselves last, us mums often need to consciously put the effort into pleasing ourselves rather than every bugger else.

it's not fair is it? that's one thing I think most people will ever get, having to put your child through something they won't like and may well cause them distress, be it physio or surgery or something else. I really feel for you, tough decisions and I can understand how it is all comsuming. I hope you get to a descision soon. (looking for a hugs smiley which is very un-MN but I think we need it here on the SN board sometimes )

Thanks all of you it quite literally is affecting everything at the moment, I can't concentrate or sleep. I think I need to once again cut caffiene and get more exercise.
No it isn't fair. She has to have this and I've known since she was born she would, it was a two stage op and they tried to do it all at once in October but ran ointo problems so the major work has yet to be done. Her condition affects her ability to cope with illness and injury so she is higher risk for anaesthetic and catching infections after would cause more of a problem to her, I read of a child from our support group who had the same surgery then caght a virus after and died as she couldn't fight it off. I know these things happen but those poor parents would have made the decision to do it early then what a price to pay . We have a psychologist who is meant to support our decisions but I have met her once, didn't like her much and she han't replied to the e mail I sent. I think the surgeon feels it is best to go ahead now, as in this summer so I keep looking at DD and thinking she doesn't know what could be coming. However the surgeon said there is no more risk now than there will be when she is thirteen so I keep thinking it is just for my own reasons if I delay. She will still be my baby when she is older its just hard to imagine.

I think if I do decide we will go ahead at least I will throw myself into making sure everything is as good as possible for er, I've already e mailed to say I'd want support for her, she doesn't talk much yet so its hardto know what her level of understanding is.
Anyway thank you all again it does help to write it down on here I think, and jus to know I am not the only one who has been forced to allow something horrible to be done to my child. She has had so many blood tests and horrible procedures done and it felt like we were just getting past the really difficult phase.

if you still feel so het up after you cut out caffeine etc, sounds like you need some support for you with dealing with all of this.

a poster on MN a few years back had a dilemma regarding a leg operation for her DS - one of the pieces of advice I think she found helpful was for her to write down why she made the decision she did about the operation, in case her DS wanted to ask her about it in the future.

used tobethin does your dd have problems with her immune system? which affects ablity to fight infections

I think I would have it done sooner rather than later. My daughter has had 6 minor ops and it does seem to get harder for her as she gets older. Having some sedation before the anaesthetic can help children lose the memory of going into theatre but my daughter refuses it! I was tempted to have it myself last time.

My daughter will probably need mastoid surgery on her ear bone sometime soon which has a long recovery and I feel sick at the thought. I feel a bit better about it at the moment but it was on my mind continuously.

Usedtobethin, I had a thread on this subject last year, I will see if I can find it in a minute as I had some great advice.

We were in a really similar situation DS2 needed the op but the potential complications were large and even the surgeons seemed at odds, not very reassuring.

The waiting is terrible, and I wish I could tell you how I took my mind of it, but I don't think you do really. I think I just existed for a while but my head and my heart were already 'at the hospital' iyswim.

oops usedtobethin, I found the thread and you were on it! You were obvioulsy lovely! I also had on one in chat but that obviously is no longer around.

I will just say that we did go ahead with the operation and all was well in the end, although they feel that they would like to do a more advanced surgery in the next year. I am so not thinking about that at the moment. Just giving him a whole year off!

I know this sounds silly but actually being proactive did help, like you said organising things that will make life easier whilst she is in hospital.

We were downloading films on to the ipod, for him and me. I had a list the length of my arm for things that we would take into hospital. I needed to feel busy.

Hi everyone. Totalchaos thank you, I think I have spoken to that poster before, she was great.

Phoenix it isn't her immune system but she doesn't produce the hormones to make you deal with stress and illness etc so is steroid dependant and has to have extra help (hormone replacement drip usually) if she is very unwell. They have extra procedures for anaesthetic and I know they would be (and have been) very careful with her,before her first GA we had four attempts to get it done and she was refused by the anaesthetists for various reasons, her levels being bad , slight runny nose etc etc so I know they won't take risks but am still so scared .
vj13 what a good idea having sedation! Actually not sure if they could with her though due to her levels needing so much attention paid they have to inject her with it before she becomes unconscious and last time couldn't get a drip in and ended up using gas which was just awful to hear (xp took her in I waited outside). Yes there are definate advantages to having it out of the way young. I don't know it just seems such a lot to go through for her poor thing. She was diagnosed with glue ear today too.

Slightly crumpled yes I remember that thread! I had one like this before DDs last op too, I think we may have had threads at the same time?I agree being proactive just keeps you going, focusing on anything other than the actual event really. Still no word from the surgeon. So glad your Ds was ok after his surgery, I know exactly what you mean about a year off! I was hoping for one summer without worrying about anaesthetic because all three that I have had with DD have been blighted by worry about whatever they are doing that year. How old is your DS now? Might go and find those threads actually and remind myself.

Hi usedtobethin, I am sure we had threads going at the same time. We had been given a date last September for sometime in Feb this year when I got a phonecall one day to say they had a had a cancellation and could we take him in in three days! OMG panic and meltdown do not cover it, I can smile now at the whirlwind of overactivity I became! In a way though it gave me less time to panic, which is a good thing as the children were beginning to worry about me I think.DS2 is 5 now and a real live wire, thats the odd thing this op was to correct his palate and help his speech but it has also helped him to eat more easily so he has finally piled on weight! Still a dot though.

I hope you are feeling okay today and that dd gets a break from all of this soon.

ah womdered as ds2 has somethimg similar from being on long term steroids and needs drips when hes unwell as struggles with adrenal function.dd is the one with rubbish immune system

Phoenix yes DDs adrenal glands don't work, is your DS s condition genetic? Just wondering if they have the same thing? Although sounds like your DS has developed it due to steroids where as Dd has needed steroids from birth because of faulty adrenal glands. Similar though,hope you are getting on ok with it all?
Thanks slightlycrumpled three days wow! ALthough yes in a way I can see it gave you less time to mull it over. I had a letter today with an appointment to see the surgeon next week so will have to get together with XP and discuss it all, yuck. Read my own advice on that thread though and I said about taking a break from it, maybe once I have discussed with XP I should do that as nothing I can do about it till we see her (the surgeon). I suppose at least if we did it then next summer hopefully would be less stressful than her first few, summer months tend to be less in the way of bugs so less hospital for her anyway which is great.

Phoenix yes DDs adrenal glands don't work, is your DS s condition genetic? Just wondering if they have the same thing? Although sounds like your DS has developed it due to steroids where as Dd has needed steroids from birth because of faulty adrenal glands. Similar though,hope you are getting on ok with it all?
Thanks slightlycrumpled three days wow! ALthough yes in a way I can see it gave you less time to mull it over. I had a letter today with an appointment to see the surgeon next week so will have to get together with XP and discuss it all, yuck. Read my own advice on that thread though and I said about taking a break from it, maybe once I have discussed with XP I should do that as nothing I can do about it till we see her (the surgeon). I suppose at least if we did it then next summer hopefully would be less stressful than her first few, summer months tend to be less in the way of bugs so less hospital for her anyway which is great.

Oh yes, do all the chatting with your XP, and then maybe plan to fill your days up and try to put it to the back of your mind, your right, there is nothing you can do to change anything and it can become all consuming which is never good for us.

Roll on next summer for her when you can all be more relaxed.

no ds caused by lomg term steroid use to control his asthma , did try stopping them but his levels did not return and his astma did with a vengernce so lesser of 2 evils.,

yes was shock at first did not know till he picked up tummy bug andb he collapsed and could not bne roused.But am ok now with it ds wears medi alert with himk being 12 he does not want mum around all time so gives me peace of mind

so can understand the worry.yep a cross the bridge when it comes

Thanks, I hate all this but I know by now that life isn't fair I suppose!

Phoenix yes DD has collapsed a few times with tummy bugs, it is terrifying, she usually recovers quickly after her injection though. DD also wears her medic alert band mainly in case of car accident or similar if I wasn't able to inject her. Scary stuff but it has all become routine and at least she is not too affected day to day. I am flitting between worrying about her op and worrying about the new glue ear diagnosis. Argh! Keeping busy definately a good plan.

Hi Leonie, thanks no its a condition she was born with but its similar, she has little or no adrenal function so has always been steroid dependant. Day to day its just a case of medicine but illnesses and injuries could be serious if not treated quickly. So adds to my worry with this op because the anaesthetic and recovery are made more complicated.

Yes do you know of it?