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Thread: Recent Accident to My Son

  1. #601
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    Brian and Ann got back to Phoenix on Wednesday night and Thursday morning. Brian is still suffering the affects of the baclofen pump removal. His spasms are bad and he sleeps a lot. I'll repeat what I mentioned earlier anyone who is considering a baclofen pump should talk with Brian about his experiences.

    Brian has not made up his mind about having another baclofen pump implanted. He has not had good luck with the baclofen pump but at the same time the spasms and the affects of the oral baclofen are not ideal either. If anyone has experience with some other way of controlling spasms please let me know.

    Roger

  2. #602
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    Brian is feeling much better. Yesterday he saw his Physiatrist here in Phoenix. He felt better after the doctor told him that the baclofen withdrawal symptoms would subside and they have been gradually.

    Yesterday evening Brian started working to catchup on his school work. When he studies it's unrelenting. He started watching lectures and reading material at 7:00 last night and was still at it at 10:00 this morning. On Friday he's taking the gastrointestinal test that he missed. At the moment he's undecided on whether he wants another baclofen pump implanted.

    Sunday Ann is going back to Baltimore with Brian. She's going to work on getting a better support network. The caregiver that Brian has relied upon is just not reliable. There have been several times when she hasn't shown up without any notice. In addition Brian looked at the bills and can see that she has charged for more than twice the hours that she actually worked. I'm less concerned with the over billing than I am about her leaving Brian without the attendant care that he needs. Brian sent her an email and told her he would no longer be using her services. Ann is going to the nursing school to find nursing students that would be interesting in doing part time work. She's going to stay in Baltimore until the attendant care issue is worked out.

    Roger

  3. #603
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    Glad to hear Brian is doing so much better, and I can't personally imagine having the stamina to study for that many hours! Going to the nursing school for aides is probably a great idea, as these people should (should, hopefully) be far more reliable. After this latest chapter I wouldn't rush into another baclofen pump either!

  4. #604
    Roger:
    Can Brian or Ann call me when they get back to Baltimore? I might be able to assist with some ideas for a support/nursing network.

    Thanks,
    B~

    Quote Originally Posted by Roger View Post
    Brian is feeling much better. Yesterday he saw his Physiatrist here in Phoenix. He felt better after the doctor told him that the baclofen withdrawal symptoms would subside and they have been gradually.

    Yesterday evening Brian started working to catchup on his school work. When he studies it's unrelenting. He started watching lectures and reading material at 7:00 last night and was still at it at 10:00 this morning. On Friday he's taking the gastrointestinal test that he missed. At the moment he's undecided on whether he wants another baclofen pump implanted.

    Sunday Ann is going back to Baltimore with Brian. She's going to work on getting a better support network. The caregiver that Brian has relied upon is just not reliable. There have been several times when she hasn't shown up without any notice. In addition Brian looked at the bills and can see that she has charged for more than twice the hours that she actually worked. I'm less concerned with the over billing than I am about her leaving Brian without the attendant care that he needs. Brian sent her an email and told her he would no longer be using her services. Ann is going to the nursing school to find nursing students that would be interesting in doing part time work. She's going to stay in Baltimore until the attendant care issue is worked out.

    Roger
    Every day I wake up is a good one

  5. #605
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    Brian and Ann flew back to Baltimore on Sunday. Brian's classes started on Monday. Ever since the baclofen pump was removed Brian's spasms have been more severe. The spasms are worse now than they have ever been. Anyone considering a baclofen pump should be aware of the difficulties that can occur. The possibility of infection is always present because the pump reservoir has to be refilled periodically. I suspect that this is how Brian got the most recent infection that required surgery and the pump removed.

    Roger

  6. #606
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    As a bit of an aside, I thought about you today when it was announced how much BOA had to pay because of the whole Freddie and Fannie Mae mess. I have a feeling you might have been pleased. Karma is a bitch!

  7. #607
    The pump should be refilled using VERY STRICT STERILE technique.
    I have been doing refills for years and never had a patient with an infection. But it is possible! Sorry to hear that it occurred and Brian gets spasms under control.
    CWO

  8. #608
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    SCI-Nurse

    I wish you had been doing baclofen pump refill. I asked Brian how they refilled the baclofen pump reservoir. He told me that his doctor refilled the reservoir with two other people in the room observing. I asked if they wore masks and he said no. Unfortunately Brian's Physiatrist at KKI is a strong willed and opinionated person. There's no way that he would ever admit that he did anything that would harm a patient. When Brian was have going through the baclofen withdrawal, experiencing hot flashes and halucinations his Physiatrist wouldn't even see. The Surgeon who removed the baclofen pump called the Physiatrist but Brian still couldn't get an appointment. Finally when Brian got back to Phoenix for Christmas he was able to get an appointment wth his Physiatrist in Phoenix.

    Brian's medical school adviser and one of the Deans at the medical school know the whole story and are very concerned. They couldn't believe that Brian's Physiatrist wouldn't see him during the time that he was having severe baclofen withdrawal symtoms. The Dean said this is not the way medicine should be practiced at Johns Hopkins. Hopefull Brian will be able to start going to a different Physiatrist in Baltimore.

    Roger

  9. #609
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    Brian is still struggling with spasms and the side effects from oral baclofen. This transition from the baclofen pump is a nightmare. He's been taking more baclofen than he has ever taken previously to control the spasms but the side effect is that he can't stay awake. The conclusion is that he can't function at this high dosage so he's going to reduce the amount of baclofen that he takes.

    Roger

  10. #610
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    Ann talked to the assistant at the surgeon's office today. Brian is scheduled to have another baclofen implanted on Jan 31. Brian has not been able to function for the last 10 days, the spasms are bad and he's always very tired. Things have been difficult ever since the baclofen pump was removed in December. The surgery could be sooner if the surgeon has a cancellation.

    Roger

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