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Thread: pberggren memorial thread

  1. #181
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    Quote Originally Posted by Alysia View Post
    blood tests continue to get better each day. But my sweetie is not feeling better. He is working very hard to breath all the time. He can almost only work on breathing. Nothing else. Eats almost nothing. With feeding tube. He is exhausted and sweating a lot all the time. Its hard for him to talk but he is very seeet and kind when he does.

    I remember when I was most ill the doctors often told me if i wasn't getting worse, I was getting better. Fighting for air can be very exhausting. I and some others here had to be intubated for a week or two to get the necessary rest to allow some healing to take place. It is encouraging to me that he is able to maintain consciousness and talk with you even if he sleeps most of the time.

    What the ICU doctor said about infection versus Wegs is consistent with info I got from my Wegs expert at Mayo suggesting I treat the probable infection first in my ear and around the BAHA site before exploring possible active Weg which was also listed as a possibility by reader of my bone scan of my skull. It is possible to have both infections and active Wegs at same time but it is generally safer to treat infections first before beginning treatment for active Wegs.

    Glad to hear he is getting better lab numbers as I think it means he is getting better even though it may take awhile for his body feelings to catch up. Best wishes for more improvement.
    Knowledge is power! Wisdom is using it to make good decisions!

  2. #182
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    We almost lost him today. That over sleeping was not a good one. He continued to be very sleepy. The ICU doc came to the room to talk with me in perfect timing. God sent him. I saw that my sweetie's sats are dropping for no reason. I talked to him and he didnt respond. At that point the ICU doc and the team started to work on him. I was shaking and crying and praying, thinking that he is dying. And then he was back.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  3. #183
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    Oh no, how scary.

  4. #184
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    It turns out that the Fentanol machine was not ok. He got overdoze of it. They put him on bi-pap machine. Thanks God not tube. Yube means the end. He is getting med to clean the overdoze. Still too scary. Please pray.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  5. #185
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    Alysia, you were so right to be concerned about all that sleeping. Thank God you were there to catch what was going on with his stats and to say something, and thank God the ICU doc was there to mobilize a team to get to the heart of what the problem was. Very scary indeed, that these kinds of mistakes and equipment failures are happening. I'm praying that things get straightened out and fall into place from here on, and that he heads toward recovery from all these setbacks. You are a heroic presence throughout all this.
    Anne, dx'ed April 2011

  6. #186
    Bing505z is offline Banned for being a douchebag
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    The BiPap should allow him to breathe easier .... Stand strong Phil

  7. #187
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    I've been off the site for a while and just heard about this. Hang in there Phil, we are all praying for you. Stay positive, we need you back to dispense your great advise.

  8. #188
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    Keep strong Alysia, you are truely Phil's Guardian Angel.

    Keeping our hopes up that this may be a turning point and that slow gradual progress is made from now on.

  9. #189
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    I'm with you Alysia and Phil, all the way, in my thoughts and with my love. xx
    Behind every great man is a woman rolling her eyes.
    Jim Carrey



  10. #190
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    Quote Originally Posted by annekat View Post
    Alysia, you were so right to be concerned about all that sleeping. Thank God you were there to catch what was going on with his stats and to say something, and thank God the ICU doc was there to mobilize a team to get to the heart of what the problem was. Very scary indeed, that these kinds of mistakes and equipment failures are happening. I'm praying that things get straightened out and fall into place from here on, and that he heads toward recovery from all these setbacks. You are a heroic presence throughout all this.
    Even in the best hospitals with great care it seems necessary or at least very desirable to have a guardian present to over see your care. I believe my survival was due to the constant supervision provided by my family who directed my health care when I was unable to do so. They can ensure hospital staff are fully aware of any important changes in ones condition and call for help when needed. Med errors are one of the leading causes of death (third in USA) in hospitals. Phil is very lucky to have such a dedicated guardian with him. But it is a very stressful job so Alysia try to take good care of yourself too. Is there anyone there to help support you or give you a break?
    Knowledge is power! Wisdom is using it to make good decisions!

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