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  1. #501
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    Great news Scout02, all the best.

  2. #502
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    What a relief for you Scout. Great news.

  3. #503
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    Ky is offline <--- Ruby, the most precious little red gem ever!
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    Trish

    Sending love and remembering Caelan with you. He was such a gorgeous little man and will forever remain close to our hearts. I hope you have a lovely, gentle day planned. Give E and R and squishy cuddle from me and S a hug and keep many, many hugs and "I know a little of what you are going through"'s from M, Me, B and D. I've instructed Ruby to make sure that her buddy is surrounded by love in heaven today xxx

  4. #504
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    TeenyT
    Scout, great news you must be sooo relieved
    branjie, how are you not long til you go to Melbourne hope all is ok

  5. #505
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    I just found out that a friend of mines sons heart surgery has been cancelled for a 2nd time, was supposed to be on Tues then got postponed til next tues and now has been postponed until the 6th. Is this normal? I'm starting to worry what will happen to my bub cardiologist told me they like to do the aterial switch between days 5-11 but my friend was told her sons vsd needs to be fixed before he's 4 mths which he will be (I think, not sure on his b/day) before his opperation. I'm so frustrated for them and scared for me and my baby. I've already had enough of being away from home and Ive still got a week and half til my bubs is born.

  6. #506
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    Thanks ladies. Yesterday wasn't as bad as I first thought. We visited the beach in the afternoon and the kids played while I sat and thought of C. The water was really calm for a change and the clouds in the sky made the sunset beautiful. It felt like C was saying "S'OK mum. I'm doing fine." And thank you Ky - you always have such a way with words! I'm sure our angels look out for each other on these days more than ever.

    Scout - glad to hear you've been give good news! What a relief for you all.

    KrissyM - They operate on a priority basis so if your baby is well, the more the likelyhood of cancellation. It's frustrating and upsetting for those who don't live near a hospital and have to travel. Generally, ops like arterial switches are done fairly quickly to avoid further complications so unless there are several babies born at the same time with major heart complications, you shouldn't get bumped. C's TAPVD repair was done when they said it would be.

  7. #507
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    Hugs TeenyT.

    Quote Originally Posted by KrissyM View Post
    I just found out that a friend of mines sons heart surgery has been cancelled for a 2nd time, was supposed to be on Tues then got postponed til next tues and now has been postponed until the 6th. Is this normal? I'm starting to worry what will happen to my bub cardiologist told me they like to do the aterial switch between days 5-11 but my friend was told her sons vsd needs to be fixed before he's 4 mths which he will be (I think, not sure on his b/day) before his opperation. I'm so frustrated for them and scared for me and my baby. I've already had enough of being away from home and Ive still got a week and half til my bubs is born.
    Krissy, closing a VSD 'around about 4 months old' is very different on the scale of 'urgency' then an Arterial Switch. My sons last OHS was bumped 3 times as I mentioned before... and even though he was in right heart failure, it still wasn't immediately urgent/life death where is HAD to be done at that time. (Despite 2 hospitalizations between bumpings as well!!) If they are fixing your friends sons VSD in the cath lab then from my experience, cath appointments get bumped even more often then open heart surgery!!

    My sons Arterial Switch was on day 7, exactly when they said it would be the day he was born. I think 'around 4 months' is not an exact science but the ASO does need to be done in the first week or so, so try not to worry. They wont put someone ahead of you unless it really is life or death for the other child.

    I can't believe you only have a week and a half to go though... wow.

  8. #508
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    thanks Teeny and M2M I feel better. I just know how sick my friends bubba is getting cause he cant feed properly and how stressed she is. The upside, for me not her, is now we'll prob be in Melbourne around the same time if I dont go over due, her surgery schedule for my due date and she's been told 2 weeks in Melbourne, 2 weeks in Adelaide then 2 weeks in Port Augusta (regional hosp about 45 mins from where we live). The cardiologist told me they like to do the ASO between day 5 and 11 but can go up to day 21 if bubs cant be transported or Melbourne is flat strapped. Not long now, 8 days til bubs is due.
    Teeny glad you had a nice day remembering C
    Scout yay for good news
    Branjie, only a week til your sons surgery, hope everything is ok.

  9. #509
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    Hi! I posted on here some time ago as my Ds has chd. We have just found out the extent, after many appointments. Has anyone come across supravalvular aortic stenosis? Ds has just been diagnosed and it looks like the gradient has increased in the last 2 months. They are now keeping a close eye on him, with echo and egc. Just wondering if anyone has / has heard of similar? I know it is very rare. Ds is 10 months

  10. #510
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    KrissyM hi, thanks for thinking of us. Packing our bags tomorrow and leaving on Sunday. Had our check at the hospital today to make sure my boy is healthy and o.k to go for his op/procedure. On the way home my son said that this is going to be bad, they are going to hurt me. Poor thing. I tried to explain again that it will be fine, he's just going to have a nap and when he wakes up he'll be all fixed and his wound probably won't even hurt unless he pokes it (that's what I'm thinking anyway). I'm hovering between feeling up beat like it's all good, and feeling so nervous I feel nauseas. I haven't told my son about the fasting for surgery yet, he's not going to like that, and I'm thinking he'll have a drip in his arm but I won't worry him about that yet. Today when we went to the hospital here my son got a big bag of pressies from Heart Kids. He got a teddy bear, a little blanket and a few other things. He really likes his bag of pressies, he's named the bear Bobby Bear and he's going to take him with us. We're taking the laptop, so hopefully I'll get a chance to get on here and let you know how we're getting on in Melbourne. I feel for you stressing over getting your bub's operation done in time. I'm sure they'll make it a high priority if it's pretty urgent. If possible, try and keep your mind busy on other things in the next few days, if you sit around thinking about it, it'll do your head in. I hope you get a chance to get on here and let us know how you're going once bub is born. We'll be thinking of you.


 

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