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  1. #51
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    This has been quite the journey!! I'll try to log in more often but I'm glad to see that everything has turned out ok for him, despite some pretty serious hiccups.
    Natalie & Dan - June 2, 2001
    Samma - Nov. 5, 2004
    Tommy - Oct. 19, 2007




  2. #52
    Posting Addict gardenbug's Avatar
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    So please tell us about Skyler's Christmas and how everyone is doing!
    Leo (3 1/2) with Malcolm the cat

  3. #53
    Community Host sarahsunshine's Avatar
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    I’ve been terrible about updating about Skyler since his surgery.

    Skyler came home on Dec 23, with a 24-h antibiotic pump and PICC line. We got to deal with the joys of changing daily antibiotic bags (not a big deal), a fidgety kid (had to call the home care nurse several times to have them come, clean out his lines, reprogram the pump, and change his bandages because they had been picked at…

    We had a great Christmas, and Skyler had the added perspective that he was partly just glad to be home, and not in the hospital – which was a revelation for him.

    Skyler went back to school with the antibiotic pump, and was not allowed to carry a backpack for 2 weeks. The teacher arranged for some classmates to be his primary custodians to carry his books for him. This seems to have worked relatively well.

    On Jan 21, one of the lines in Skyler’s arm lost it’s end (probably because he had been playing with it but he won’t admit it), so he got to spend the entire night at Emerge. The upshot was that they either had to put in a new PICC line, or simply remove it and stop the 6 week course of antibiotics 1 day early. They opted for the latter.

    Skyler has been excited! Now he is allowed to wear a light backpack, though the doctor said he still is not allowed to pick up or carry his brother or sister until his birthday (end April).


    Last weekend (1 week after getting his PICC line out), we went swimming and he decided to go for a swim in the deep end with his dad. He’s never been a great swimmer, always using a life jacket. But Sunday, he swam an entire length in the deep end, by himself, and got to the other end smiling! He said he was hardly breathing hard, and it had been SO EASY! He says he can hold his breath much longer.

    His dad, who had been watching him and swimming right close by in case he needed help, was extremely impressed and has been telling everyone who stands still enough to listen how much his new heart valves (and graft) have improved his endurance. All this, and Skyler’s heart surgery was on the 28th of November! And his sternum was opened on Dec 10th again! And now he’s swimming and running and playing dodge-ball!

    It’s amazing! And he is so excited about doing sports (which he's never been excited about before).

    Look what more than 3x the blood flow through your heart can do. (And he’s also 5 pounds heavier than pre-surgery!)
    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


  4. #54
    Posting Addict wishing4agirl's Avatar
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    I'm glad he's doing so awesome. Eli gained weight like that after his last surgery. Why can't he pick up his siblings until the end of April? Is it because of the infection or something else? Just curious. Thank you for updating. So glad he's doing so much better.

  5. #55
    Posting Addict gardenbug's Avatar
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    I think because of the weight, Angela. They're being super cautious...which is fine!
    Leo (3 1/2) with Malcolm the cat

  6. #56
    Community Host sarahsunshine's Avatar
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    Angela - I think it's because they want to be totally sure that his sternum is healed before he picks up heavy things... He had his sternum openned twice in 2 weeks so they think it will be a bit slower to heal than usual. Also he had some cosmetic touch-ups to make it look better (he used to have a rather strange shape to his chest) and the surgeon said it might take a bit longer than usual to heal.

    His cardiologist may have a different answer on Feb 14, though... That's when he goes for his follow-up.


    Oh, and Skyler tells us he weighed 73/74 pounds when he weighed himself yesterday... I asked if he had dried his hair and peed first or after!
    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


  7. #57
    Posting Addict wishing4agirl's Avatar
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    That would make sense.

  8. #58
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    what a great update!!!
    Natalie & Dan - June 2, 2001
    Samma - Nov. 5, 2004
    Tommy - Oct. 19, 2007




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