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  1. #31
    Posting Addict wishing4agirl's Avatar
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    Oh no!! Keeping him in my prayers. This is actually one of the reasons we are trying to time our projects so that we can be done before any given cardio appt since we never know what is going to happen at them. Only about 4 more projects to go inside the house. KUP

  2. #32
    Community Host sarahsunshine's Avatar
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    The surgeon took a look this morning and wants to go back in to clean it up. I don't know when. I assume today.
    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


  3. #33
    Community Host sarahsunshine's Avatar
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    I guess Skyler's incision started to ooze pretty seriously this morning on its own. Despite being on antibiotics all night he was feeling pretty lowzy. They got the surgical team together and had to open up the incision and his sternum. The infection was all behind the sternum. Now's to hoping that they got it all, that they are giving him the correct antibiotics (they haven't got the results back from the labs and he's on Vancomycin and another antibiotic), and that they didn't get the infection to spread to the bone while cleaning him out... Tomorrow morning (4am) he gets another test to see if his white blood cell count has come down.

    High doses of intravenous antibiotics are worrisome as well since he lost much of his hearing due to huge doses of gentamicin as an infant (he's deaf in one ear and has high frequency hearing loss in the other). I realize that gentamicin is for gram-negative antibiotic as opposed to gram-positive antibiotic and Vancomycin usually doesn't have many side-effects, but he likely has to be on it for 6 weeks - intravenously. Ugh. I was on intravenous antibiotics for 3 days once and that was bad enough.


    Anyhow, Skyler was back in the Pediatric ICU, but they are hoping to get him back up to the Pediatric ward sometime tonight or tomorrow. They are saving his room (a luxury single room this time) in the Pediatic ward. I hope this helps him sleep.

    I will update tomorrow with more news.

    And here's what I found out:
    1) While they were in there they added a suture to his ascending aorta graft. Not sure why.
    2) I read the history since Saturday in Skyler's binder. Skyler had a fever of 39C (102f) for 2 days. The HealthLink (hospital) called to check up on how Skyler was doing on Saturday, and his mom said he was fine but that he had had a fever for 2 days and that his incision hurt. They told her to get him to the ER immediately. In the ER report, it said that she had given Skyler Ibuprofen to reduce his fever... Now, I know I feel powerless in all this so it accentuates everything, but the release stuff says that if he gets a fever post op to call the nurse/doctor immediately. Why didn't she do that? And why is she giving him ibuprofen (not supposed to take it because it interacts with his blood thinner meds)? We've discussed this with her many times, yet she doesn't listen! ARGH! This makes me so frustrated.
    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. #34
    Posting Addict wishing4agirl's Avatar
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    I was coming to see if they had gone in yet. I'm so sorry about the infection and things down hill. I can't blame you for the worry about the hearing loss due to the antibiotics. :bigamhug: Does he wearing hearing aids now? I have a friend with a daughter who is deaf. I think she said at one time it was because of the medicine she was on as a baby because she was a micro preemie (born at 24 weeks).

    I don't know how you are keeping it together with biomom. I would have lost it. She could have cost her son his life. This is VERY disturbing for her to have done that. To not call when he developed a fever? To be complaining of the pain? And then give him a medicine he's not suppose to have? (I can't figure out where the smilies are and don't know the code, but if I did I would be putting the red faced steaming mad one here.)

    Continued prayers for the whole situation.

  5. #35
    Community Host sarahsunshine's Avatar
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    Thanks for the sentiments. Right now Skyler is in good hands, and he's the one I'll be thinking about, not biomom. Don't get me started.

    Skyler is not happy camper today. His chest hurts, he aches, and they stitched him up instead of gluing him so that it has a chance to drain. The beautiful reconstruction job that he had looks like a stitch job, not a beautiful narrow line.

    He's on 3 kinds of industrial strength antibiotics, some of which are the same ones that have caused him to lose his hearing to begin with back when he was 4 months old. He keeps saying that he shouldn't have said anything so he could still be at home and not have had a second surgery. Oh, the mind of a 12yo...

    We are waiting for the results of the antibody tests, the ones that will tell us what antibiotics he should be on, but the results haven't come back yet. He's on triple the morphine he was originally on this morning. They say that he MAY be out this weekend.

    In better news, he and I managed to figure out how to get him in a reclining chair so that it makes it easier for him to sleep and get up, and most importantly, pee. Getting up from lying down is a HUGE ordeal, so this was a vast improvement.

    If something happens different, I'll update.

    Oh, And DH and I managed to paint the kitchen last night and this morning (after taking the little ones to the day home and before going to the hospital. Tonight we put up the base boards so a little organising and it will be good - at least functional. It still means we only have half the kitchen painted, but at least it's not upside down! I can deal with this EASY!
    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. #36
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    Poor guy. I can't even imagine going through major surgery twice in such a short period of time! He will be a stronger person because of all that he has gone through. And thank you for keeping us updated!

  7. #37
    Posting Addict wishing4agirl's Avatar
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    So glad you figured out a way to make getting up a little easier for him. You will need to remember this in case I need it in the future. That stinks about the "patch job" they did. Prayers his recovery goes smoother.

    Oh and Yay for the kitchen getting somewhere. Can't believe you got some painting in even though what you all are dealing with. You'll need to post pics when it is all done.

  8. #38
    Community Host sarahsunshine's Avatar
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    Results of the antibody test came back, and Skyler has had the vancomycin removed from his antibiotics.

    Unfortunately, they want him to stay here for a full 2 week course of the gentamicin, which means that his discharge day should be Boxing Day (that's Dec 26 for you Americans). We will try to get him home for Christmas, but we'll just have to see.

    In the meantime, Skyler still has his chest tube in (that is the VAC treatment), and says it is so painful that he can't walk, or stand up straight. I hope he doesn't need it too much longer so that he can get to doing more physio with no excuses.

    We also found the hospital school and signed him up so that he doesn't miss out too much on school, but more importantly so he has places he has to be on a regular basis and doesn't get too bored. He's still on high morphine. I hope that comes down soon, along with his pain.
    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. #39
    Posting Addict fudd8963's Avatar
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    Sarah, what an ordeal this has been. I really hope that he is feeling better soon and able to come home for Christmas. When he does come home, will he be with you and DH? I hope so! I know he will be well cared for then! HUGS and I will continue to keep you all in my thoughts and prayers.
    ~ Tara

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



    4,043oz of BM donated!


  10. #40
    Community Host sarahsunshine's Avatar
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    Good news:

    Talked to the Infectious diseases doctor for a while yesterday afternoon. Lots of good news.

    1) Skyler's blood cultures (to see if infection in his blood) have come back negative for over 48 hours.
    2) Only one bacteria was found and it is a highly treatable Staph infection
    3) Although he is on the terrible antibiotic that caused him to lose his hearing, it's at 1/3 the usual dose, and it's spread throughout the day to keep the dose as minimal as possible at any particular time. The literature doesn't show any loss of hearing at this dosage, but they are going to triple check the literature and possibly remove it early if they find contrary info.
    4) Since Skyler started the antibiotics on Sunday morning (Sat evening?) that means that the full 2 week course of the Gentamicin (antibiotic) will be over by Saturday Dec 24. That means that they will discharge him on Christmas eve (morning?). Yippee! Then we get to "self-administer" the only remaining one for 4 weeks at home.
    5) After coercing Skyler to get up and walk around today, he was feeling much better in spirits as well as physically (he as an achy behind from sitting all day for ages).

    I hope for significant improvement today. Hopefully the removal of the drainage tube will be a good start.

    They are starting the paperwork on removing the drainage tube.... maybe tomorrow?
    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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