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Thread: Communication Breakdown

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Unhappy Communication Breakdown

    ((((((HUGS)))))) To All ~

    Is it too much to ask that I be informed of specialist consults and test orders from that specialist?

    Jon's home health nurse visited today to take Jon's blood to test his Dilantin, Depakote, and Phenobarb levels, as well as a CBC and a CMP, which would tell us about Jon's hemoglobin and his sodium, potassium, liver and kidney functions, etc.

    She had NINE VIALS for his blood draw! He is anemic, you know. NINE VIALS is A LOT OF BLOOD.

    More blood tests were added to this already comprehensive list by a hemotologist, who evidently had been consulted by Jon's doctor.

    News to me.

    Jon's nurse called the Nurse Practitioner, who had faxed the orders for the blood tests. The NP explained that the hemotologist wanted to find out the cause of Jon's anemia.

    Really? Well, he could ask me. I know the answer to that one. Depakote. For crying out loud, everyone knows the answer to that one in the hospital, where Jon has already undergone this battery of tests twice!

    And, if anyone had asked ME, I could have told them that Zosyn and Synthroid depleted Jon of red blood cells just two months ago, which is why his tests have been so askew.

    But no. Let's take NINE VIALS of blood from Jon, who is anemic, and difficult to draw. I refused.

    I negotiated with our nurse to negotiate with the NP over the phone, to draw 4 vials of blood today, and I said, "I need to know Dilantin and Depakote levels more than anything else right now."

    Since Jon needs his catheter changed next week, we deferred some of the blood tests until his nurse returns for that purpose. She will also take more blood then.

    Unless ... I can convince Jon's doc, the NP, and the hemotologist to look at Jon's blood work from 2009 and 2011, when Jon was hospitalized, and they explored his anemia, which is fairly consistent with the tests this new hemotologist wants to do on Jon.

    And there better be some improved communication with ME by the doc and NP, before these kinds of things are sprung on me unknowingly. Jon's home health nurse (who is also our dear friend) was shocked that I had not been contacted about the hemotologist's consult.

    What is the point of repeating studies on Jon to determine the cause of his anemia, when we already know the cause? The hospital ICU doctors ruled out iron supplements and other potential options to treat Jon's anemia. And that is because Jon's anemia is drug-induced by Depakote. There is no way around it.

    Too many chefs in the kitchen. Unfortunately, one of them isn't me.

    This is going to change.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Distinguished Community Member andromeda31's Avatar
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    I would be mad too! 9 vials is a lot. Did they say why they neglected to inform you of the additional tests?

    Good luck, it seems that all doctors could use improvement on communication skills.

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up

    Thanks, ((((((Lisa))))))

    No, I still don't know why after 2 weeks, the doctor's office didn't inform me that they were consulting with a hemotologist.

    But, I took the bull by the horns this morning, and I called the home health nursing agency, and spoke to the coordinator, who had received a heads up from Jon's nurse that I'd be calling. She was ready to give me the results I wanted.

    Jon's Dilantin is in a normal range. Jon's Depakote is in a normal range. And Jon's hemoglobin is 8.1. That means that Jon is out of blood transfusion territory! YAY! Doing the red blood cell dance of joy here!

    The computer, the doctor's office ~ they are not my source any longer. I'm going straight to the nursing service for lab results. Then, with those results, I'm going to Jon's doctor and asking for his assessment.

    I just thank God for Jon's nurse. She is the best!

    Jon is fine, so we are fine.

    It will be interesting to hear the hemotologist's take on Jon's blood work. I hope that he has an answer and a viable safe means of helping Jon.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    9 vials? WOW! That's a lot.

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((funnylegs4))))))

    Yes, 9 vials is a lot, especially when you see them laid out in front of you, and you wait as each one fills up. Since his blood draw, Jon has been lethargic. Most likely because he's lost blood from the blood draw!

    I am thinking about forestalling the other blood tests, until more of these results come in, and I'm hoping that the hemotologist will consider Jon's anemia as a factor in the amount of blood he wants to draw. I don't know this doctor, as he is consulting with Jon's primary care doctor.

    I feel like I'm on the outside looking in.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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