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  1. #41
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    I'm glad things are moving along and his infection is easily treated. And it will be awesome if he gets to go home Christmas Eve! Thanks for keeping us up to 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

  2. #42
    Posting Addict wishing4agirl's Avatar
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    Thank you for the update. I was actually just going to check on how things were going. So glad the infection is very treatable and Christmas Eve looks like the discharge date. Yay for tube removal.

  3. #43
    Community Host sarahsunshine's Avatar
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    Well, the prayers seem to have worked.

    Yesterday, I took Skyler's 2.5yo sister to the hospital to visit for the entire afternoon/evening. Skyler has been begging to see her, and it was about time that they could both deal with it energy-wise (and me too). It's really funny the effect that the 2yo has on Skyler. If she tells him to eat something, he will. If she tells him to drink, he will. If she wants to run down the hallway full speed, he will too.... Not so wise.

    Skyler got put on a 3rd antibiotic (oral). I don't know the name of it but it turns his pee and tears red. Weird. He got a broviac put in (permanent IV). Then he had his chest tube and all previous IVs pulled. He's now got one hook up, and it's not permanent, and he's much more comfortable. The first thing he did was go for a long walk (OK, about 5 minutes) to the beautiful hospital "Healing Gardens". There he rested and looked out the window for about 20 minutes and decided that he had to head back because one of his teachers was planning to come visit. The teacher was late (and Skyler was stressing about it at 4:01 because he said he would be there at 4pm!), but stayed for a nice long visit. Brought him his favourite kind of Gatorade. The teacher also brought him an envelope - an envelope from a school contest for selling magazines, and Skyler won $50! We stashed this in a pocket of his jacket so he could use it to do some Christmas shopping.

    The other good news is that Skyler MAY be able to get some "Pass" time to get out of the hospital during the times when he doesn't have to take meds. We'd start slowly, of course. First, we would just like to take him for a drive to see Christmas Lights. Then maybe to get some specific Christmas gifts for people (Mom, Dad).

    The other day Home Depot came and brought a bunch of their little kids kits, and Skyler's Mom absconded with a whole bunch of them. Now Skyler is going to make a couple for his younger siblings for Christmas (Helicopter, boat). Yesterday Santa came to the hospital and gave Skyler a remote control car and helicopter. Now Skyler doesn't need us to get him anything for Christmas!

    Lastly, the infectious diseases doctors believe that since the infection left his bloodstream so quickly that it's very likely that that the infection is out of his system. They aren't taking any chances, though.

    Thanks again for all the prayers and vibes. I think it has helped a lot.
    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. #44
    Posting Addict SparkleMomma's Avatar
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    Wow Sarah....what a journey this has all been. I just finsihed reading the whole thread and omgosh Skyler is my lil hero this season!!! I still can not believe that biomom is still as usless as usual. Would it be benificial to bring social work in on her? She needs a swift kick in the you know where when it comes to a lot of her decisions on Skyler...she has put his life literally at risk more than enough. Hugs my friend--when things calm down let's do coffee and catch up :hug:

  5. #45
    Community Host sarahsunshine's Avatar
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    I think social work is a lost cause... a professional psychologist designated by the courts to help put together a "parenting plan" with BioDad has written to the courts saying that she is unwilling to cooperate. I don't think a social worker will help.

    You are down at the UoA hospital aren't you? We could meet for lunch or coffee or something. I'm there daily!
    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


  6. #46
    Community Host sarahsunshine's Avatar
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    It looks like Skyler is breaking out on Friday, not Saturday!!!! WOOHOO!!!!!
    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. #47
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    Awesome!!!

    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

  8. #48
    Community Host sarahsunshine's Avatar
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    More detail:
    Thanks again everyone!

    Skyler is doing great. He is still periodically having pain in his fingers and toes, but curiously, only when his mom is there. He says it's because Dad lets him take a shower.

    Great News: Skyler will be going home on FRIDAY, not Boxing day, not Christmas, not Christmas Eve, but Friday! Why? well, no one works on Saturday to be able to get him set up for discharge, so they are doing it a day early. We already head our training for the home antibiotics, so it's just time to finish the gentamicin and get a home pump.

    Lyn, I think they wanted to keep him in until he had only one IV antibiotic to pump. Two would mean two pumps and a lot more joins to keep track of.

    Other great news, Skyler has been getting a bunch of passes from the hospital so he was able to come home for dinner last night for a couple hours. Today he gets 5 hours pass (3pm until 8pm) instead of 3h. Tomorrow, he will get even more and is hoping to go to school to watch a movie for his first period class as well. He is excited to see his teachers and friends. I think he will be exhausted afterwards, but that's just fine.

    In other news, the physio has cleared him for any exercise as long as it's not contact (he has a Broviac so that does limit things). I wonder if school can set up a cardio work-out schedule instead of his usual gym class. He goes to a sports school so we'll see. It would be great for him since he's never pushed himself in his life, and it will be 6 weeks post heart surgery when he returns to school after Christmas.
    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


  9. #49
    Posting Addict CamelNoodle's Avatar
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    Thanks for the update. Things are sounding great!
    William 10/6/2004
    Visit his CaringBridge
    Joseph stillborn 01/08/2007
    Thomas 05/05/2008
    John 6/5/2010
    m/c 12/23/2012
    m/c 01/02/2014 twin angels

  10. #50
    Community Host sarahsunshine's Avatar
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    Skyler came home today!!!! Boy he is glad to be out of the hospital.

    But, I tell you, December is the month to pick if you have to be a kid in the hospital! I can't believe the sheer number of gifts, many of which I hope got donated because there were probably a couple hundred amazing gifts that didn't get adopted... and things that DH and I would love for Christmas like high tech remote control helicopters and stuff.

    Now he is on IV antibiotics for a month.
    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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