Update on my difficult child's heart surgery

Discussion in 'General Parenting' started by fiendish, Jul 19, 2008.

  1. fiendish

    fiendish New Member

    My 5yo difficult child (High-Functioning Autism (HFA), congenital heart defect) went in for heart surgery in Boston on the 7th. He did really well! The staff at Children's in Boston were really great. I am really happy with how they listened to me (actually believed that I know my kid better than they do!) and really did a lot to mitigate his anxiety and sensory issues. As usual my wild fears about what might happen were worse than the actual happening (sometimes not so far off though).

    For the preop testing we got a child life escort the whole day--she got us into all the testing quickly and got us the gentlest, fastest people to do the tests. She got him two cars as rewards :) I brought a bag full of space toys too.

    The sedation was pretty awful though. The last time he went under GA
    he took versed before and was OK with it. This time he drank half and
    freaked about the rest, so they had to give him a shot. I kind of
    wish they had just given him the shot first thing. After that the
    surgery took about 5 hours and he did great. They are pretty happy
    with the valve replacement but are still worried about another issue
    so he might need to go in for an outpatient procedure in a couple of

    They doped him pretty well on morphine and ativan before they
    extubated him the night after the surgery so he would transition and
    not rip out his tubes. We had a rough night after that but he did OK.
    They let me sleep in his ICU bed with him and were really good about
    letting him alone and being really gentle with him.

    He's really into space right now and had been telling the
    anasthesiologists all about the planets before he was sedated. While
    we were waiting for him to wake up after being extubated one doctor was
    telling the others how difficult child is a space buff. I thought difficult child was still
    out but he opened his eyes and said "I know a LOT about Jupiter" and
    then fell back asleep. It was hilarious that those were his first
    words! Never underestimate the depth of a spectrum kid's obsessions!
    I bet he dreamed about Jupiter the whole time he was under.

    After he was more aware he had a really hard time with all the poking
    and prodding, the lines, and especially all the tape. They had to
    give him more ativan for every procedure and even to take IV lines
    out. I wasn't there for the chest tube removal--husband said it took lots of ativan, morphine, and 4 people to hold him down. It got to the point where he started screaming at anyone in scrubs for them to get out, don't touch him, and since he was doing pretty well they released him earlier than they normally would because they thought he'd do better out of the hospital. His cardiologist joked that he was being "really hostile" to the nurses. Yeah.

    He's really doing great, behavior-wise. His routines and sleep have
    been less disrupted than I thought and he seems to be getting back
    into his regular pattern. He's even taking the fact that he can't
    really play outside or go to summer camp for another week pretty well.
    He's bored but grandma is here for the week to play with him and I
    took him to see Wall-e again a few days ago. The theater was empty so
    he could talk loudly at the screen :) He is crazy about that movie.

    Thanks for all your help & suggestions--the social story was especially a great idea. It really helped him.
  2. tiredmommy

    tiredmommy Site Moderator

    I'm glad everything worked out so well! :) (I was hoping you would update us. :winks:)
  3. SRL

    SRL Active Member

    Glad to hear that things went as well as they probably could. Also glad to hear that the doctors recognized that he'd do better at home and moved on that. I would have appreciated that as a parent.

    The social stories can be very useful for children with your son's issues. You can write them on any topic you need to (I once did one for vacation with schedules and pics of the net of places we were going). There's also some DVD materials out there--here's some I've heard parents rave about:

    You also might check out the Joy Berry books on various social situations.
  4. Andy

    Andy Active Member

    So good to hear things are going well and you all made it through some scary moments. A grandma to keep entertained and catered to will be fun.
  5. Fiendish,

    I am so glad that things are going better than you expected. I also am so glad to the hear that the staff wisely listened to you and payed attention to your knowledge of difficult child. I have always heard wonderful things about Children's of Boston.

    I will be sending prayers and good thoughts your and difficult child's way. Thank goodness for Grandmas!