dd1 doesnt want me going to see peter at the weekends and

[misdee]

doesnt want to go herself. what do i do? she went on friday after school, and refused to go yesterday and today. yesterday i stayed at hoem with her and dd3, whilst dd2 went with grandma to the hospital. today dd1 refused to go again, and tried to keep me away as well. she was in tears.

misdee when my cousins were small their dad was in the Falklands, then later GW1, the reactions sound similar to the things they did. I know its unlikely but are there any other children around with daddy's having heart ops? Just knowing she's not the only one would help I guess. Also make sure she knows nothig is her fault- kiddies tend to blame themselves, even when they're not remotely involved.

most are younger than her, or their dads are fuerther on with their treatments and are going on day trips out with their dads.

Its a bit of a long story really. When dh was just 21 he had a mystery illness which they still don't understand. It caused his heart to enlarge, he had heart block, a temporary pacemaker and was put on the transplant list as very urgent. He never got a heart and made what appeared to be a full recovery. That was 1989. We got together shortly afterwards.
In 2001 I came home one day from being out with dd to find a note from our GP to say dh was in hospital (my phone was swithched off).
Dh had woken around 11am (he works shifts) and felt strange: clammy, dizzy, very low pulse. Called GP who came and got him to hospital. Heart rate of about 20. By that evening he had a temporary pacemaker, he now has a permanent one. It was so totally out of the blue and took a great length of time for us to trust his body. If he felt slightly odd, we'd think something was wrong. He's since been diagnosed with sarcoidosis, and they are debating if this is what as caused all his heart problems.

Life is good now. We forget the pacemaker most of the time. Kids are brilliant and know they can't bash him on that part of his chest! He gets the batteries checked once a year and attends different clincs for them to keep an eye on him.

Thats it in a nutshell.

Peter got an virus when he was 22, caused his heart to enlarge, wasnt expected to last the weekend according to what bhis mum was told. but he was put on some hefty meds, and remained stable for 3year. now on transplant list as you know.

we were told when he was diagnosed that 33% make a full recovery from the virus and the heart returns to normal, 33% need long term meds, and 33% will need a transplant.

what is sarcoidosis?

Blimey misdee, that sounds so familiar. Dh was in ICU for about 10 days then back on a cardiology ward for about another 5 weeks. He was obviously one of the "lucky " 33%.
Will try and find the info sheet dh has about sarcoidosis as I find it difficult to explain and they do it so well.
How old is Peter now. Were you together before or after he became ill?

we'd been married about 2.5yrs when he fell ill. he isd now 26.

Oh misdee, you really have been/ are going through it aren't you.
{{{{hugs}}}}} to you