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October 25th and interesting observations from PEG nurse regarding the blood!

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    October 25th and interesting observations from PEG nurse regarding the blood!

    G'day neuro buddies.

    The hospital PEG outreach nurse visited today to look at Grant's PEG

    The first thing she did was take the Micky Button out. Hmm, I didn't think she would do that. The PEG is fine and working correctly. She immediately put it back in.

    BLOOD

    Here is a bit of history regarding the oozing blood.

    A few weeks back the PEG was very weepy around the perimeter. The liquid weep was watery and a bit oily. But not much blood showing at all.

    Then a week ago, the weepy area was bloody.

    GRANT'S RESPONSES

    Grant has for some months now quite often been pulling a complaining face. This is not an end of the world, woe is me complaint , just a complaint that looks to us very suspiciously like a reflex type action.

    NURSES OBSERVATIONS

    There is a small possibility that Grant might have a tummy ulcer. At the moment his bowel movements are not dark (indicating blood). His colour is good and his breathing fine.

    So, the nurse suggested that we see Grant's local doc and have him review the situation. She said that he might want to do a hemoglobin check and possibly recommend a gastroscopy.

    OUR VIEW

    Grant has had the PEG now for about 12 years. The first one was the Bard button, which was a resounding failure as it only lasted a couple of months and then had to be replaced under anesthetic. When Grant had the Bard button inserted the biopsy and photos showed extreme acid reflux, with ulcers everywhere. Grant was then placed on losec, and following gastroscopies(the last one about six years ago) didn't show any ulcers.

    We think it is high time for Grant to have another gastroscopy to see if indeed he has an ulcer, which can apparently appear like this = intermittent flair ups.

    The PEG nurse has emailed Grant's neurologist, the gastro team and the dietician, her observations.

    TIME GENTLEMAN PLEASE

    We actually have a first appointment with Grant's new gastroenterologist for February 1st 2012 = Yeah right. Good one. To wait until Febraury for an appointment and then wait for a test, is much too long to wait, don't you reckon?

    So, on Friday I will push very hard to expedite a few tests, starting with the hemoglobin.

    I of course will keep you informed right here, so stay tuned and don't turn that dial

    Hugs coming your way for your precious kiddos.

    Seeya,

    Paul, Alison and Grant the champ in absolute championship mode.
    Foster parent, now medical guardian and administrator
    for Grant the champ aged 30, yes 30!
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