Overnight musings….

So, I’ve been rolling the cardiology appointment around in my mind. I’m like that…I process things over and over again. I’m fully satisfied that Mariella has no cardiac issues. That is not on the table, and totally off my mind. I didn’t realize how relieved that it would make me feel, since I didn’t consciously think there was an issue.

In the conversation about Mariella’s history, a funny exchange happened. The doctor was telling me what he had read, and how he had understood it…and said “I’m missing something about the belly…I read something, and I can’t remember what it is.” I replied, “she has some gastroparesis…but Dr. Goode doesn’t call it that, Dr. Duda does…but not Dr. Goode.” He looked a little surprised, and said, “Dr. Goode DOES call it that….that’s exactly what I was forgetting.”
So it makes me wonder…why did Dr. Goode tell me it wasn’t gastroparesis. Dr. Duda told me her percentage…I can’t remember off the top of my head what it was…but it was definitely slower than normal, so I call it that. Was she just trying not to worry me? I don’t know. We DID talk about the possibility of treating her slow tummy…and we both decided that at the time, it wasn’t necessary, so she does agree that it’s slower than normal. I always thought that perhaps as a gastro, she had a different definition of “gastroparesis” that maybe it had to be slower than what Mariella’s tummy is to make the actual diagnosis.
Also, the cardiologist was taking about her tummy and lungs being connected. Dr. Goode sees no evidence of such, BUT…most of Mariella’s tests are inconclusive. They show that there is damage to her lungs, they show damage to her esophagus, they show a slow tummy…but the problem is that we haven’t found an effective method to treat them. (as much as I would LOVE a test to say “this is the problem” and have a doctor say “I know how to fix that” I’m appreciative that the tests show SOMETHING…otherwise, I’m pretty sure I would have been arrested for Münchhausen by Proxy. I know I FEEL crazy half the time)
As I type, I think I can confidently say that Mariella has turned the corner. She has a little more energy. She isn’t using her accessory muscles to help her breathe anymore. (it was quite obvious yesterday, the doctor mentioned it.) She isn’t breathing between words, and giggling isn’t sending her into gasping breaths or uncontrolled coughing. (and Mariella is a giggler…the smallest thing in the world sets her off) When she SINGS, she is still gasping a bit…which she doesn’t normally…but I’ll wager that by tomorrow, she’ll be a whole lot clearer. I’m not hearing the grossness in her lungs, and she’s bringing up the more normal amount when she uses the acapella. (I know…there probably shouldn’t be anything when she does it…but there is) I think I’ll let her graduate down to 2 times a day again.
This weekend is Rob’s big Memorial Day Barbeque 2 day event. (oh, yay…/sarcasm) So most of the day will be outside. I’m hoping it’s not going to be gross out. Should I pretreat Mariella before we light the firepit?
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2 Responses to “Overnight musings….”


  1. 1 kerri May 29, 2010 at 4:12 pm

    YES pretreat. Both of you. As Epic Steve once told me “Pre-medicating is NEVER a bad idea” :-). I premedicate for bonfires at the cabin all. the. time. Ditto cleaning the bathroom if I’m using icky chemicals (that I try to avoid). Ditto even really short walks if I’m flaring. (etc etc lol)

    SO, you DID get a sort-of answer about M’s tummy, which is SOMETHING. Is it the guess that that’s what’s causing her growth problems? I know you’ve said they treat her lungs like a CFer, but what about pancreatic involvement? Does she take enzymes?

    And, once again, SO happy nothing came up in her heart 🙂

  2. 2 Sara C. May 29, 2010 at 4:39 pm

    We really don’t know what’s causing the growth issues…Her gastro insists she’s not malabsorbing…which would be pancreas and enzymes. I think maybe I’ll ask her pulmo (they are an accredited CF center, too…so he would know the answer.)

    I’ll be premedicating.


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