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  1. #21
    Community Host sarahsunshine's Avatar
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    Thursday Skyler again improved drastically. His breathing is better and he is off oxygen. He was very sick of his bed and figured out how to con Dad into being his therapeutic cushion so he could lie down partly on Dad for his afternoon nap. Not so comfortable for Dad, but a vast improvement for Skyler! Another reason Skyler wanted to sleep on his dad is because there is a window he could look out of more clearly from the guest bed that his dad was trying to nap on.

    The hospital is made on a bunch of multi-floor atria, each of which has about a six floor ceiling made of glass. This means that every patient room in the hospital gets natural light. It's very pleasing. Skyler also happens to have the room directly across the atrium from the glass elevators so he can watch visitors come up from four floors down, get off the elevator, and walk around to his room. He's got ample warning. Yesterday he was sufficiently alert that he could keep track of that and enjoyed it.

    Odd - I thought that this had been posted on Friday morning.

    As a further update, Skyler just left the hospital at noonish today (Sunday). He's been restless and ready to go except for his INR levels. I find it odd that the doctors didn't want to discharge him yesterday even though his INR was at 2.0 . We've managed his INR at home for the past 12 years and many times it has gone below that, why now can we not do it ourselves? But, be as it may, he is now out of the hospital and very glad to go home.

    As for the saga of divorced parents, we needed to have both INR monitors calibrated when Skyelr had blood work taken this morning. Biomom calibrated hers and then quickly ran home with all the INR test strips. We got to the hospital 45 minutes later. She told us that it was to hard to test both machines at once. Then she told us she took all the strips home so we couldn't do a test to calibrate our machine... Oy! Then we had to get the nurses all worked up trying to find some test strips around (they didn't have any in the nursing station and couldn't get a hold of the thrombosis clinic since it's Sunday)... Geeze... Why do some people always have to try to make things hard for others?


    Yes, he's doing great.... It's still amazing to us that his ascending aorta as at 5cm and no one had a clue... 5cm is big to begin with on an adult. 5cm on a 70lb kid is MASSIVE!
    Last edited by sarahsunshine; 12-04-2011 at 07:16 PM.
    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


  2. #22
    Posting Addict fudd8963's Avatar
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    That's great news that he is home and recovering! Is he staying with you guys or with his biomom?
    ~ Tara

    April 19, 09: 37 week Take Home Twins!!!!
    Addison Bree - 5lb 6oz
    Brooke Isabella - 5lb 12oz



    4,043oz of BM donated!


  3. #23
    Community Host sarahsunshine's Avatar
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    He's supposed to stay with Biomom for 2 weeks, and then with us for 2, I think that's going to change with Christmas, though.

    What craziness that the doctors recommend that he miss only 1-2 weeks of school... "Excuse me, I have to have open heart surgery, I'll be back in 2 weeks."
    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. #24
    Posting Addict fudd8963's Avatar
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    REALLY, only 1 to 2 weeks? WOW, that's not long at all. How is he feeling now that he is home?
    ~ Tara

    April 19, 09: 37 week Take Home Twins!!!!
    Addison Bree - 5lb 6oz
    Brooke Isabella - 5lb 12oz



    4,043oz of BM donated!


  5. #25
    Community Host sarahsunshine's Avatar
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    He's doing great! Went and visited briefly yesterday afternoon. Amazing - his colour looks better than before 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


  6. #26
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    It's awesome that he's doing so well!

    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

  7. #27
    Posting Addict wishing4agirl's Avatar
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    I'm so sorry I haven't posted more encouraging thoughts. I have been honestly too lazy to log in. Sad I know.

    I'm so glad he is doing so well. I haven't had to deal with surgery and schooling yet. That's great he gets to go back so soon. And great his coloring looks so good.

    I just have to say this. And then I'll bite my tongue. It is totally irresponsible to leave you with no testing strips. He does come to your house. They WILL be needed there. Okay biting tongue now.

  8. #28
    Community Host sarahsunshine's Avatar
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    Angela - Ah, it's not worth the fight. Biomom pulled a "I don't have any test strips and I can't afford them" so that the clinic would give her some free. She did this simply because she doesn't want the hassle of having to go through Dad's insurance, then hers, then mine. Dad's insurance covers 80% of the cost of test strips, and mine covers all. So really, she's taking test strips away from someone else who can truly not afford them... just because it's convenient. (They cost about $10 each and she got 24). this is simply another thing that annoys me that I just shake my head at...

    The only reason we were going to borrow her free ones and not use our own is because she told us she had some that were just given to her and we should use hers since they were free and for calibrating our machines. she said to leave ours at home because they weren't needed. After taking her advice, she takes off with them and we can't calibrate our machine? Oy....

    Yep, working together for the kid's benefit...

    OK, now I will bite my tongue!
    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. #29
    Posting Addict wishing4agirl's Avatar
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    And here is some kleenix in case you bite your tongue too hard.

  10. #30
    Community Host sarahsunshine's Avatar
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    Skyler's mom just called to say that he was re-admitted to the hospital (no beds available so they don't know where to put him). He was slowing down today and feeling crummy. He had a little bit of discharge coming from his incision (I think). He has extremely high white blood cell count and high "celiac" count (don't know what is meant by that). Dad is going to spend the night at the hospital with him. Of course, the house is upside down because a simple cabinet installation turned into a full blown kitchen repainting and we just took off 2 walls of wallpaper and every counter is full of stuff.
    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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