We have another date! AGAIN (Nov 21 update)
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Thread: We have another date! AGAIN (Nov 21 update)

  1. #1
    Community Host sarahsunshine's Avatar
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    Default We have another date! AGAIN (Nov 21 update)

    Nov 21: We managed to get Skyler to get a good night's sleep by not telling him about surgery yesterday, somehow giving him vit K to decrease his INR, waking him up at 6am for a big drink of juice, take another INR (2.2) which was way too high (was supposed to be under 1.5), called the blood clinic. They said to take him to emerge and they would deal with reversal there. Left at 6:45am with dad. I got the other two kids organized and was making plans for pick-up woth friends when I received a phonecall (8am): SURGERY CANCELLED FOR TODAY. My GOD. This is the worst yet. cancelled on 2hours notice, AFTER showing up to the hospital?

    Scheduled back on Nov 28th...


    Nov 20: Just got a phone call. Back to Nov 21.

    Nov 17: Now we have Nov 28th...

    Nov 14: Another new date. Now we have Nov 21st scheduled. This is getting old.

    Surgery date likely Nov 16 (Wednesday).

    Possibly Nov 14 (Monday) because of a "likely cancelation".

    That makes it next week. Skyler's cough is TONS better, with a mild residual cough. The sooner the better so he doesn't get to worry about it as long. The waiting is the worst part.
    Last edited by sarahsunshine; 11-21-2011 at 11:30 AM.
    Skyler Dylan 22 April 1999
    Reed Aslan 17 June 2007 ~ 8 September 2008
    Ivy Rayne 3 May 2009
    Leo Spencer 2 Sept 2010
    Forrest Reed 15 Aug 2012


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    Posting Addict wishing4agirl's Avatar
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    I'll be keeping you all in my prayers. Does he know yet? What did he think of Leo's surgery?

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    Posting Addict gardenbug's Avatar
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    I worked on photo books for him tonight. He's the guardian of the family history.
    Leo (3 1/2) with Malcolm the cat

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    Posting Addict gardenbug's Avatar
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    I ordered the books this morning.
    Leo (3 1/2) with Malcolm the cat

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    Community Host sarahsunshine's Avatar
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    Well, we told him that he would be having surgery before Christmas. We haven’t told him exactly when. I do believe that it will be after Halloween when he will be told.

    On Nov 4 he goes in for pre-surgery and tests. He will need to be told before that, obviously (or maybe not so obvious, I don’t know how his mom’s brain works. Maybe she’ll expect the hospital to tell him what he’s there for?).


    Skyler was fine with Leo’s surgery, but very obviously not used to allowing someone else be the focus of the doctor’s attention at the hospital. He kept trying to be the focus of the nurses and we frequently had to remind him that he was not the patient, he was there as support. No he could not sit on the gurney (toddler sized), no he was not getting cream for the needle he wasn’t going to have. No, they were asking about Leo, not him. A bit more than a little frustrating for me (and dad), but a good lesson none the less.

    He has been saying that he hopes that his surgery will be before Christmas, but I think that that is a defence mechanism based on the fact that he has seen a list of questions about heart surgery on his mom’s desk, and everyone refuses to tell him when it is. Being told it will likely be before Christmas somehow makes it more real and he doesn’t like that idea. I think it’s better than suddenly telling him he’s having heart surgery “next week”.
    Skyler Dylan 22 April 1999
    Reed Aslan 17 June 2007 ~ 8 September 2008
    Ivy Rayne 3 May 2009
    Leo Spencer 2 Sept 2010
    Forrest Reed 15 Aug 2012


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    Posting Addict wishing4agirl's Avatar
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    I think that is really sad that his mother won't tell him. Especially when he's seeing those things. Okay mouth shutting. Sarah you are so patient. Maybe it doesn't feel like it, but I think I would have gone off already. And gardenbug, the memory books are AWESOME!!! We have them for Eli and we ALWAYS take them to the hospital. We just usually add some more pictures before we go. That way when he's there he can see everyone he loves.

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    Community Host sarahsunshine's Avatar
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    Guess what!

    I just found out that if you call On-X (the prosthetic heart valve company) that they will send you a complimentary t-shirt, possibly a demo heart valve, and an on-x ring in the size of your choice made from the same carbon fibre that the heart valves are made from! I just ordered one of each for Skyler!
    Skyler Dylan 22 April 1999
    Reed Aslan 17 June 2007 ~ 8 September 2008
    Ivy Rayne 3 May 2009
    Leo Spencer 2 Sept 2010
    Forrest Reed 15 Aug 2012


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    Posting Addict gardenbug's Avatar
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    Oh Sarah! That's so neat. You are the perfect person for him... REALLY! I love your idea of making him a poster of people who love him too. And a pillow too.

    I would think he'd want the surgery before Christmas so that he could get back to school sooner and perhaps not miss so much. He does so love Christmas too, but it will be much calmer than he's used to. I HOPE!

    I wonder if Indy will sleep near him for a while....and if his Dad will paint a mural in his room for him too...

    Anyway, you are very patient, it is true. On the surface.
    Leo (3 1/2) with Malcolm the cat

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    I hope she doesn't spring it on him at the last minute. He needs time to prepare himself mentally, unless he's the kind of kid who will obsess and become really anxious if he knows the date ahead of time. (That's how Isaiah is, so we try to prepare him for upcoming events without giving him a specific date.)

    Deb ................. DH Norm
    DS Caleb, 13 ...... DS Patrick, 12
    DS Isaiah, 8 ......... DS Thomas, 7

    DD Cherish, 6....... DD Emily, 7\18\13 ....... Ripple, 17
    William, 14 weeks, 4/11/12

  10. #10
    Community Host sarahsunshine's Avatar
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    Well, we told him (all of us) after he went trick or treating on Monday night. He goes in for pre-surgery on Friday, and unfortunately I can't make it (I have some super important meetings I've been working up for for the past month and a half).
    Skyler Dylan 22 April 1999
    Reed Aslan 17 June 2007 ~ 8 September 2008
    Ivy Rayne 3 May 2009
    Leo Spencer 2 Sept 2010
    Forrest Reed 15 Aug 2012


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