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    #160545 06/19/13 10:39 AM
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    Lori H. Offline OP
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    My son got through it. I got through it. He is home now.

    He had a lot of anxiety about the surgery. Several things were worse than he expected them to be. Doctors told him before surgery that he would have a lot of pain afterward and that he would have this pain for at least a couple of weeks before things start to get better. I am very proud of him that he found the courage to go through with the surgery knowing this.

    After his surgery, I sat with him in the recovery room for about an hour. There were about 10 other kids there and it seemed they were all moaning in pain or vomiting and I am sensitive to this kind of thing but I was not going to leave my child. He wanted me there so I stayed. One of the first things he wanted me to do was check his memory while he was under the influence of morphine. He was fine. He had been studying German so I asked him questions about that. He could talk. He kept asking when the pain medication would start working. He was doing better than most of the other kids in the room.

    I had been worried about his sound sensitivity issues. His sensitivity to some sounds was a problem but he got through that too. He said the tv in his room emitted a high pitch noise, but I couldn't hear it. He told me to look it up on the internet. He said older people sometimes can't hear it but it is there, so I couldn't watch tv at all during the 5 nights in the hospital. I had to eat a meal once in the bathroom with the door closed because I was making too much noise when my fork touched the plate. It seemed like the pain made him more hypersensitive to noise. The worst part was the machines that kept beeping whenever he moved and he had to move around a lot to find a position to sleep in with the least amount of pain. All night and all day we listened to beeping machines and the noise from people walking in the hall and the sound of crying babies. It bothered him that nurses would come into his room without warning every hour or so and that the physical therapist came by to watch him walk when he had been walking when she wasn't there.

    When my son was very young he was sensitive to clothing tags and always seemed to have problems with his socks not feeling right. I wondered how he would do with the inevitable pain from surgery. I wondered if he would be able to walk with the pain. Not only did he walk, but he did really well. He didn't have any balance issues, didn't need support at all to walk. Doctors and nurses said he was doing better than the other six kids who had just had spinal fusion surgery. They were going to let him go home after just 4 nights because he was doing so well, but he wanted to stay just in case so the doctor let him go home the next morning.

    Most of the doctors and nurses were really good about answering his questions but there was one that saw my son's questions as a sign that he was being argumentative. When he asked too many questions about the medication side effects she said she couldn't believe she was arguing with a 15 year old and that he should just do what she told him to do. She didn't tell him that one of the medications he was taking could make him sick if he didn't take it with food. Vomiting is not fun any time but especially after spinal fusion surgery and I think this might not have been a problem if he had known to eat a few crackers when he took the pills. My daughter was angry about that one. The nurse also didn't tell him that another problem he was having could have been caused by the medication and saw his questions about that as arguing. A doctor agreed with him that it could have been the cause of the problem he was having.

    My son and I are used to looking up information online to check and make sure it matches what we are being told by medical professionals. Some medical professionals don't like it when my son questions them, but it is his right and responsibility. I was very proud of how he handled himself in the hospital.




    Lori H. #160548 06/19/13 10:44 AM
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    So glad to hear it's over and you are home! It sounds like he was a real trouper. Good job getting through it all! A big {{{hug}}} to you and a more gentle one to DS. Please keep us posted.

    Lori H. #160550 06/19/13 10:53 AM
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    What good news! What a relief.

    It is absolutely his right to ask about medications and such. He is right to do so. Health care workers I know say that you SHOULD ask these questions-- you should be informed, check the information, and make sure that the cadre of medical professionals are providing coordinated care.

    The stimulation and lack of privacy, on top of fear and pain, must have been a real challenge. Sounds like he handled himself with aplomb. Hope he has a good recovery at home and enjoys some peace and maybe a fun movie or whatever helps you all start to relax.

    BTW, speaking from experience, I can say that one can be hypersensitive to noise when in under stress. He's not crazy about that:)

    Best to you, your son, and your DD as well.

    Lori H. #160582 06/19/13 01:01 PM
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    I'm so glad to hear your ds made it through the surgery and is on his way to recovery. Just reading your post brought back so many memories of things that stressed me out during my brief stays in hospitals - it's not an easy environment for even mellow people to try to sleep and recover.

    And I am very proud of your ds for researching, for asking questions, and for being actively involved in his own medical care! It's really important, and shame on that nurse for not appreciating him!

    Best wishes to your ds!

    polarbear

    Lori H. #160588 06/19/13 02:07 PM
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    So great to hear from you, Lori-- I have been checking each day to see how things are going.

    Way to go- to BOTH you and your DS. smile


    Schrödinger's cat walks into a bar. And doesn't.
    Lori H. #160589 06/19/13 02:14 PM
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    Oh Lori, big hugs to you and your son! smile


    What is to give light must endure burning.
    Lori H. #160591 06/19/13 02:18 PM
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    I'm am so glad to hear you are home safe, how strong you both are!

    Lori H. #160592 06/19/13 02:19 PM
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    Congratulations to you and your ds for clearing that big hurdle. I am so glad to hear that he got to go straight home and didn't require a stay at a rehab hospital. Good for him to question the staff. We have caught mistakes a couple of times, and that were at top hospitals.

    Lori H. #160595 06/19/13 03:21 PM
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    So glad you guys made it through! As someone who once made my husband leave the house because his voice made my skin hurt (I had mastitis at the time), I can say that some of us do get really sensitive to sound with pain. And I used to be able to hear the high pitched noise from tvs. smile

    Good for both of you for knowing your rights as patient/advocate and for not being afraid to ask questions. DH is a doctor and in his experience the docs who get put out are usually the ones least confident in their abilities.

    Hugs to you both and hopes for a smooth recovery process.

    Last edited by GinaW; 06/19/13 03:23 PM.
    Lori H. #160739 06/21/13 08:06 AM
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    That's great news Lori, I have been thinking about you and your son a lot and what you must be going through esp with the white coat anxiety (which I share). Best wishes for a speedy recovery and a new life for your son free of pain!

    A note about sound sensitivities: I have suffered with them all my life and whistling especially can drive me to near homicidal thoughts - it is much worse when I am under stress. I thought it was just my crazy quirk, but I just recently learned there's a name for it: "Misophonia" and apparently Neurofeedback can help (although I have run 17 sessions on myself now and I still intensely dislike whistling so we shall see).


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