I hope you don't mind twinmam, but I have broken this up into sections to make it easier to read.
From Twinmam.
Hi. Have already posted in children's health on this and had lots of support but have some more twin- specific questions/ dilemmas. Please excuse typing as using I phone whilst sitting in my little hospital bedsit.
Will be as brief as I can with background:
basically DD2 has had worrying cough since jan but GP sent me away virtually accusing me of being fussy. 2 weeks ago yesterday I took her to out of hours dr with croup like cough & heavy breathing. We've been in hospital since and on the wed she was taken into intensive care as her breathing was so bad. They took her into theatre on the Thursday morning to have a look - found a lot of swelling & mucus and tests confirm infection. The docs are also thinking she has done kind of underlying structural weakness such as a floppy larynx but everything was too swollen to look properly. They put a breathing tube in - the size they'd normally use for a newborn and she is 16 months old.
She has been under sedation with the breathing tube in ever since making it 10 days now. They were expecting the swelling to go down and to extubate within 48 hours but there is no reduction in the swelling at all which is beginning to get very scary & frustrating.
I miss her so much and am also beginning to worry about the likelihood of a trachy.
Anyway, her twin sister hasn't seen her now since the day before the op. Before that DH or my parents were bringing her in to play with DD2 in the hospital play room.
They are still bringing her every day to spend a few hours with me and I've been leaving hospital to take her to the park, put her to bed or be there to give her her breakfast. I miss her too very badly and feel guilty but also find it very hard to be away from the hospital. It's making me feel very torn. In typical 16 month old style she's doing brilliantly and is my one ray of light at this very dark time.
We're lucky to have a big support network of family and friends and DD1 is in her own home surrounded by lots of people who love her which must help her retain a bit of normality. What im wondering is what impact this must be having on DD1. She is missing me but at least we spend time together each day. What about her bond with her twin? She must really miss her but is too young for us to explain. When we thought DD2 would be under for just 48 hours it was easy to make the decision not to bring Dd1 into intensive care but we're ten days in and still no change. Of course, this can't persist forever.
I don't know a time frame but I know that if they can't bring the swelling down she will have to have a trachy which just seems so hideous for my little girl who loves to sing and chatter, like mutilating her. I know that we have to do whatever will save her life but really it just seems so wrong and awful.
Anyway, should I take DD1 into intensive care to see her sister briefly? Would this reassure her or frighten her? Dd2 is unconscious and hooked up to lots of machines. I'm hoping to talk to the consultant on Mon to get a clearer idea of what their plan B is so we might then know that is she's not ready to extubate by a certain day then they will do the trachy...
Has anyone been in a similar situation? Any thoughts on how to make this as easy as possible for my LOs?