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Robbie is in ICU with an infection

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    #61
    SharonD I know it is very hard to keep fighting for your child and worrying that your child will have to live with the choices you make. Especially when you can't get all the information you need or know the right questions to ask.

    We tried HBOT for my son and I would consider it again, however it is a hugh time and cost commitment. You cannot go 3 days between treatment. I know of a child here who had HBOT before her fusion surgery and they felt this contributed greatly to her recovery.

    All you can do is keep asking questions and trying your best. If Robbie is anything like my son, sometimes he is the person you have to fight the hardest to do what best for him.

    I hope you have some better news soon.

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      #62
      Please warn Robbie of this....

      I also have been fighting a bone infection and I also have a PIC line,
      PLEASE Tell Robbie to be careful if he has a extension on his Pic line. It easily gets caught in the space between wheel n push rim I got mine caught when going down a ramp OUUUUCCCCHHHH!!! I have been reading your posts and he sounds like he has allot of spirit!!! I am assuming that when he gets out of the hospital he will do what I did and get right back into life and his friends so I wanted to warn him about the PIC line extensions. His spirit will help him get through this. Im Praying for you both!!

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        #63
        [QUOTE=Cowgirls can go splat;1552764]I also have been fighting a bone infection and I also have a PIC line,
        PLEASE Tell Robbie to be careful if he has a extension on his Pic line. It easily gets caught in the space between wheel n push rim I got mine caught when going down a ramp OUUUUCCCCHHHH!!!

        It already happened, first day home! Now he knows....and yes it was a big OUCH!

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          #64
          well Robbie still has the pic line and last week had an mri done to check the bone. today we got a call that they want to do a bone biopsy next week, I guess the infection is still in there. I meet with the surgeons Monday to get all the info.

          anyone have experience with this?

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            #65
            The usual reason for biopsying is to run a culture and sensitivity so they can be certain they're using the most effective abx to treat. I'm hoping, however, that the MRI was inconclusive so they need to do the biopsy to confirm that the osteo is gone.

            As always, you're both in my thoughts. Will be watching for what I hope is some good news -- you guys are long overdue for some.
            It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

            ~Julius Caesar

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              #66
              Hope the biopsy will give Robbie's docs the info they need to help him, whether it's to confirm that the infection is gone or to show them the best treatment to use. Best wishes to you both.
              MS with cervical and thoracic cord lesions

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                #67
                I'm glad you posted, Sharon. I'm sorry to hear that things haven't cleared up for you guys yet. It has to be frustrating for you both. I hope the biopsy gives you some answers and shows the way to treatments that will help. My best wishes go with you.

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                  #68
                  Best wishes to you and Robbie, Sharon.

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                    #69
                    Just yesterday I looked up this thread, for whatever reason was wondering about little man. Thanks for posting Sharon. Hope he's keeping his spirits up.

                    He's one of the young people I am very envious of because he is so well supported by you. My mothers Parkinson's disease took hold when I was his age and always wonder how different life would have been if she never got sick.

                    I hope he knows how lucky he is.

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                      #70
                      Thank you all for your support, it means so much to me. To hve a place to go and ask my questions is truly a God send. As for Robbies spirits, this is how the conversation went yesterday...

                      Me: Rob I got a call today about the MRI, seems the infection is not clear and they want to bring you back to the hosptial next week for a biopsy.
                      Rob: Well that sucks, really bad timing with school just starting
                      Me: I know, I'm sorry sweetie.
                      Rob: Mom, can I go to the beach this Saturday with Ben, Rachel, etc...and whats for dinner?

                      He is a CHAMP!

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                        #71
                        Yes, Sharon, he certainly is - and so are you!!
                        MS with cervical and thoracic cord lesions

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                          #72
                          Originally posted by SharonD View Post
                          well Robbie still has the pic line and last week had an mri done to check the bone. today we got a call that they want to do a bone biopsy next week, I guess the infection is still in there. I meet with the surgeons Monday to get all the info.

                          anyone have experience with this?
                          They can run a nuclear scan to see if the osteomyelitis has cleared. Its not invasive like a biopsy. I had one 20 years ago.

                          But of course like someone else said they may be checking to see if the antibiotics are the correct kind.

                          Hope this ends for you and him both soon. ((hugs))
                          T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                          My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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                            #73
                            Never had a bone biopsy .. I'd be worried about disturbing bone that is already infected since it's so difficult to cure.

                            I've had bone scans and an MRI to diagnose as well as blood work and looks of wound (and drainage amount - a lot of sirrus fluid is a good indicator of bone involvement).

                            Probiotics every day without fail. Diet to increase the immune system. This really sucks and I so get it.

                            I'm happy to report I am infection-free and have been for quite a while now ... it is possible. This is someone who was facing amputation. My foot, while scarred and certainly not winner in any foot contests, looks good to me!

                            I love Robbie's attitude ... I'm so sorry he's young to have to deal with all this. It's not fair.
                            Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                            T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                              #74
                              I can't offer any info but I am praying that you guys get a positive result from the biopsy so they can get a handle on this. Keep up the fight.

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                                #75
                                Yes, the biopsy is to determine what type of bacteria and how this can be treated. while they are in there they will clean out any infection. I'm hopeful this will just mean a change in antibitotics.

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