I don't want to take him back there........

[Mouseface]

Sorry, I seem to be having a bit of a wobble today. DS is going back into hospital on Tues (at the crack of dawn) for more surgery, on his palate this time. He has been in before for major heart surgery and after being given the all clear to go home, within a matter of hours, he ended up back in PICU. He was very, very poorly due to the simple fact that the doctors in charge on the ward that day DID NOT LISTEN TO ME or his staff nurse!!!

In a nutshell he ended up fighting for his tiny little life (lungs collapsed, fluid in lungs, body shutting down, unable to breathe or get a line into him etc) and to this day I am both amazed and incredibly thankful that he is still in our lives. It was such an awful time, one I had to go through alone as my hubby was with our DD (work, school and location issues) so maybe that's why I am super prickly to this pending visit? The events of that day are being investigated and I have met with his cardiac liason nurse about it but I'm really scared that if I have any concerns again, I won't be listened to or seen as being precious because of last time?

Anyone been through similar or have any words of advice for me please? I may have to start drinking now. Assuming I can stop crying long enough to open some wine

Not so much words of advice but just a big hug and wishing you the best

Mouseface - my dd has had complex heart surgery, and due to being spectacularly misdiagnosed by my local hospital was in a very bad way. She was on PICU for 4 weeks, the ward for a further 4 it was all abit of a nightmare. She's since been back in hospital for several other surgeries and procedures. It's that first one that sticks though. Like you was pretty much by myself as the heart unit isn't local and dh had to stay home with our boys who were 2 and 5 at the time.

Stand your ground if you're worried about him but I'm sure all will be well. Ask your cardiac liasion to come visit you whilst you're there (i'm assuming you won't be on the cardiac ward?) - just to give you a bit of support.

Take care.

I'm not surprised you feel the way you do. Do you have someone to go with you this time for support?

((hugs)) I think you need them. DD has heart surgery in her future (some point between now 11yo and when she's 16yo). NOT looking forward to it. More (((HUGS)))

Thank you for the support, today is going o be very long. And thank you for the hugs Loudlass, hope you are feeling better today?

I do have someone to go with me this time, DD is staying at Gma's house to be spoilt as it's half term so hubby is going to be around. And I think his cardiac nurse will come see him anyway, she is involved in the investigation.

Spent nearly all last night crying - think my hormones are on the blink!! AGAIN!! I think that once he's out of surgery and I can hold him again, I'll feel better. My DH says that they (different ward this time, not cardiac) will be very aware of the ongoing issues and investigation re the last time he was in.

I know that we are very very lucky to have him in the first place. Especially given that the last time we were in PICU, we saw four families lose thier babies. Makes you realise how lucky you are, even when you're going through your own drama. Just awful.

How long is it since you went through that experience Mouseface? It will get better I promise but when it's fresh in your mind and you still have ongoing worries about it, it is difficult. dd was overdosed whilst on PICU and it really shook my faith in the team. The investigation was handled beautifully and it did help to restore it in time. Don't forget that it's totally normal to lose the plot a bit when you have to put your child through surgery, and that's without all that's gone before. It's great feeling to get them back afterwards.

I post on the Heartline message board here. You may already post there - not sure? - but if not do pop along. You'll be made most welcome. Good luck for tomorrow.

I am so sorry for what you went through. I can understand how scared and worried you must be now. But I am sure the hospital will be even more viligant because of your previous situation. Hope his op goes well. Thinking of you tomorrow!!

SMBK - November 24th at 6.30pm. That's when they finally pushed the emergency button as it were and realised that he was fighting for his life. I had been telling the staff he wasn't right since 7.30 that morning. At the time I documented everything as it's all a bit of a blur now. PICU gave him a breathing tube too long for his airway so we went from being in the frying pan to the fire!! The tube got blocked and cut his oxygen off - sats dropped to 10!! Good job he was on numerous monitors!!

I know that I shouldn't dwell on it but I guess I've not really talked about that day. Not in full. It's just something that happened.

Thank you for your kind words

Not long ago then. I had PTSD after a hosp[italerror 9another case of not believing) almost cost ds1 and me our lives andit took a long whiole to get over- ahrdly surprising that you feel as you do so soon afterwards!

have you any access to aprofessional counsellor who can help?I know my Uni gives students and employers that,as do toehrs. If notlonger term you may wish to ask your GP for a referral. For me it aswriting it all down and posting on here that helped, something simialr or adiary might at least help you get everything clear in your head which is I think an important first step.

Goodluck with the surgery, of course you are scared, who woudln't be?

I do think you need to talk about it Mouseface. I plodded on after our experiences with dd (4.2.94 imprinted on my brain); on autopilot as you do, because you still have all the day-to-day stuff to deal with, until she was readmitted with bronchiolitis some months later. After that admission I lost it for a bit and was signed off with anxiety which was definitely a form of PTSD as Peachy says. I wrote a lot about dd at the time in a little note book which I still have. It helped to get it out.

Thank you. I think that talking may help but I'm not ready to say it all out loud. When I do talk about it (even in tiny bits) it makes it so real and raw.

Maybe writing it down will help. I think I'll start there. My mum says she thinks that I should be offered some form of counselling and that PTSD wouldn't be a huge surprise. One thing I have found odd with my family is that no-one has asked me what actually happened, maybe they can't handle the thought of it all either.

Oh well, time is getting on, I need to go and pack

Chocolate and wine.

I still get upset talking about dd's near misses. Take your time with it, but don't bury your feelings. Let us know how you get on this time.

Thank you so much, you've really helped today. I have chocolate in my bag now but doubt the wine will go down well (well, it will) on the ward!!!!! Will let you know how it goes x

I had counselling for PTSD after DS2 was seriously ill (and it was becoming apparent these weren't short term problems), it did help so may be worth thinking about.

I think our families can also find it so difficult, they don't want to make our upset worse and of course grandparents in particular generally adore their grandchildren. I can clearly remember catching my mum crying in the corridor of the hospital with a nurse when I thought she had gone home after visiting.

DS2 had a palate repair done just over a year ago and whilst deeply unpleasant (he was 5 at the time so very aware) it wasn't too bad. He has been far more poorly from respiratory infections that have floored him. Just make sure they don't let the pain relief ware off at all, also his face may seem swollen and bruised so don't panic if it is. It's quite normal apparently.

You're clearly used to the hospital routine, but another thing I always forget when DS2 has surgery is to add at least an hour to how long they say he will in theatre for. Surgeons often forget the time the aneasthetist is with them and recovery afterwards iyswim.

Let us know how it goes, oh and definitely chocolates and wine!