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    Post bronch response?

    <P>I know this has not been M's response to bronch before--and sadly we're becoming old hats at these stupid things considering we've done three this summer and they are kicking around whether they are going to do another one in October.</P> <P> </P> <P>However, this time, he has had a severe...
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    Hospital visit

    I know I haven't been on here in ages.  I know just1more is here still.   Tom and M were life flighted to Atlanta this evening.  M started puking blood at 3pm.  He's one of the lucky 12% with liver disease from his CF.  AFAIK, Heptalogist is very certain this is a ruptured esophagial varcise. ...
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    Never a good sign

    We've moved. We're trying to transfer M to the local CF center. They called to get him registered and for some reason, the new Peds didn't send any records, so I had to give a brief run-down of his case to them. As I explained where we're transferring from, they are great, good, etc. I then...
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    Liver Child

    The CF center gave up on trying to manage M's fat soluable vitamins first of July. They don't currently have a GI on staff and after 18 months the Nutritionalist had simply tried everything she knew to try. M's Heptalogist has mentioned the possibility of moving to monthly IM injections to get...
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    blech, cough's back

    We are passing a cold around the house. This afternoon, I noticed M is coughing more than usual. He has an occasional cough that is mostly the hour after he does hypertonic every day but otherwise rare. Never thought I'd pay so much attention to a cough before him. I can't tell you how...
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    Bone pain

    Okay, I've seen LOTS of conversations with adults stating that they have bone pain related to their CF, especially in the legs. M has been screaming in the night for 6 months now about...leg pains. The pain travels up and down his leg, but its always there and most nights he wakes up screaming...
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    My grandmother tells me

    That's what I got told today. She's praying and God is going to heal him. Heal him from the CF. Restore his liver to fully functioning. He's even going to be healed from his mental retardation and bipolar. Yup, I'm supposed to plan for him to have an independent future without needing to...
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    Can't catch a break

    M got home from the hospital Wednesday. He had 8 teeth removed, 8 teeth crowned and 1 root canal, so major dental work. Pulmo who discharged him sent him home with 2 days worth of pain meds. Meanwhile, he's falling apart at the 3 hour mark from what he claims is break through pain. He can't...
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    Good progression or bad?

    Okay, M came home 8 months ago now, and was put on a vest within a week of homecoming. For 8 months, he has NEVER coughed while vesting, despite our trying to teach him how. Well, this fall, he's been on antibiotics twice, just finished Levaquin 2 weeks ago but the cough went away a week...
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    The coughing is killing me

    M just came off 2 courses of antibiotics last week for a cough we could NOT get under control. We'd get it knocked down and he'd get another cold and start it all over again (would get over the cold but the cough would increase). We all got the same cold 4-6 weeks ago and I have several with...
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    How much bowel does he have?

    M came home 5 months ago with a spotty case history. We've tracked down as many of the records as I think we're going to find at this point. And, considering he had NO medical care from age 1 to age 3, we're lucky we do have most of them, imo. But, we've had a specific question for a year now...
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    Frustrated with home health

    Grr. We have a normal home health agency for when we need stuff that we've used for 2 kids now. But, when our CF clinic has to call in respiratory stuff, they call a different group. We'll we have 7 children. And, someone in those children decided to get a little TOO helpful last week and...
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    Stupid cigarettes

    So, some lovely middle aged man decided the best place for him to smoke his death stick was right in front of the door to one of M's doctor's offices. And, M had the pleasure of walking right through the cloud of smoke Monday mid-morning. He's been coughing and hacking ever since. And, its...
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    Won't stop licking himself

    Okay, M is low IQ and has major sensory issues. He won't eat salt at all, we're trying to teach him to like it but fostermom wouldn't let him have it, so its an uphill battle. For now, I keep him on Gatorade for salt replacement as well as fluids (he was using to drinking coke all day). But...
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    What is the point of the CF nurse?

    Maybe I'm missing something here. When I have a problem, I assume my first step is to speak to the nurse, to see if its something she can handle or whether it needs to be referred to the doctor. Is this not the purpose of a CF nurse? Because, its certainly the purpose of a nurse in any other...
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    Oh heck, they messed up all his meds

    They released M for home IVs today. We got home health set-up, got his meds going. We're having a problem with his name. Its related to the adoption and the fact that we started his care in his legal name but the state put his medical card in his new name, which won't be a legal name until...
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    Nose bleeds

    M is having nosebleeds now. In my hemophilia son, nosebleeds are almost always because he's been picking his nose. And, I have seen M picking his nose a time or two but not really significantly. He's having a trickle of blood at least a couple times a day now. Dh says he's watched and it...
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    The vest is here!

    After 6 years of no ACTs, M's vest finally arrived this morning. They said since he's not used to any ACTs to work our way up to 20 minutes twice a day. Said don't be surprised if the best we could do at first was to just get him to wear the vest. Yeah right! The vest is a hot commodity. 12...
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