Uh-oh: Back to the Doctor

UPDATE: Meredith is considerably sick again, unfortunately.  We wound up taking her back to the emergency room just before noon, and she was in so much pain that the doctors have actually already given her one and a half shots of morphine this time.  They’re going to do a CAT-scan, because her white-cell count is 41 (normal is around 5-6, Meri’s was 10 last week when she was in the hospital). One doctor told us that a protein in her tests, C-reactive protein (I think), which will always be elevated if there is anything TRULY bad going on in the body, is still normal.  But they don’t know why her white-cell count is so high. So, CAT-scan next, and more IV fluids and steroids, and now, morphine.  I feel so bad for my girl. More after the fold.

We had a horrible time with Meri’s pediatrician practice this morning, which has put us at least 2.5 hours behind the curve.  We’ve all been told, in this age of managed care, that you should check in with your General Practitioner or “family doctor” before escalating to a specialist or going to the emergency room.  Of course, everyone also knows that if you slice an artery open while chopping carrots, you don’t call for an appointment at the family doctors’, you wrap it up and head for the emergency room, pronto.

One of the things we’ve been grateful for (and hopeful because of) was the fact that over the last week, Meredith’s symptoms, while they’ve seemed to ebb and flow, never included that terrible stomach pain which rendered her unable to keep anything, including water, down.  When she came into our bed this morning before dawn complaining of an upset stomach, we were worried, but hoped that we could just comfort her until breakfast and get her meds in her, and all would be well.  We decided to do the liquid Zantac first, thinking that it might help settle her stomach enough to take both breakfast and the oral steroids.

No luck; within 20 minutes, she was throwing them up again, and it felt like we were right back in last week and the week before.  Beth left for work, and I called the pediatrician to see whether we should just head back to the emergency room immediately, or if there was some kind of one-time shot of steroids which could right the situation and get Meri back on schedule to keep going with the oral meds (and avoid IVs and hospital stays).

This is where things got screwed up at the pediatrician’s office.  I asked to speak to a doctor – NOT a nurse, since in the last two and a half weeks, I’ve noticed that half of the nurses I mention this to have never heard of the condition before, and I wind up having to speak to a doctor anyway.  Add to that the fact that the last time Beth called for a nurse at the pediatrician’s office, a peppy-but-clueless-sounding woman called us and said “so….what’s going on with Meredith today?” Which is what they say to anyone who calls at any time. No indication on the part of the nurse who’d called that she was aware of Meredith’s recent history, or had even looked at any chart.  So nurse-talk hasn’t proven very helpful for us with Meredith’s recent problems.  Also, since Meri seems to have had a more-difficult-than-usual course of this illness, I wanted to talk specifically with one of the three doctors who have actually been involved in it up to now.  I knew that the main one, Dr. Brown, was out of town with her family for spring break, but there are two others, and I told the receptionist that I wanted to talk to a doctor, due to the intricacies and severity of Meredith’s recent condition.  I specifically mentioned two previous hospitalizations within the last two weeks.

No call.  For an hour.  Meredith throws up again.  An hour and a half.  Still no call.  Finally, after over two hours, at nearly 11am, I finally decided to bundle up Meredith AND Jack and drive up to the pediatrician’s office, where, I figured, they wouldn’t be able to ignore me.  Meredith throws up again as she’s getting into the car.  Drive to the pediatrician’s office.  Sign in…only to find out that not only is the primary doctor on vacation (which I knew), but the OTHER one who was initially involved is on vacation all this week, as well, and the doctor to whom both of the others gave a full briefing before they left….isn’t working that day. Aaaaaaargh! Three doctors in the office, none of whom have seen Meredith for this condition or know anything about it, are there.

I walked out to the parking lot, called Beth, and between us, we decided that since we couldn’t seem to get anyone to actually help us at the pediatrician’s, I would just go to the emergency room….three hours later than I would have decided to do so had this happened on a Sunday, or when the pediatrician’s office was closed.  Some help they were.  As I’m literally carrying Meredith and trying to open up the back of the van with one hand to lower her into the seat, one of the nurses comes out of the office, and inquires grumpily whether I was going to bother to stay to talk to Dr. Monica, whom I’d asked to speak to.  I said, no – I was told she was “seeing patients,” and she’d get to me as soon as she could, but that we couldn’t wait any longer.  GOD, was I mad.  I actually called their office back on the way to the ER, because I was so appalled at the way we’d been mis-handled.  I told the woman who answered the phone that I had no idea how busy a morning they’d had, and that I understood Dr. Monica had been “seeing patients” all morning. But I asked her what percentage of those patients, in HER opinion, had conditions as severe or worse than Meredith’s. She seemed unable to answer that one.  Wonder why.  Grrrrr…..

We’ll try to keep you posted as new information becomes available. Send us some good vibes if you have the time.

Don’t have much to tell you right now, except that Meredith has worsened significantly again.  She’s already thrown up twice this morning, and seems listless and pale.  I’ve been waiting for a call from her pediatrician, but now, after more than an hour, I am simply going to take her there, where they CAN’T ignore me.  Hopefully, I’ll be able to post more of a status update on Meredith in a few hours.  Think good thoughts for our poor girl.

3 thoughts on “Uh-oh: Back to the Doctor

  1. Wow, Lars!!!

    Is it time for a consultation or 2nd opinion? I am soooooooo sorry for all of you, but mostly Meri, at this time. Please give her my love. I’ll be waiting for the next post.

    Mom

  2. Oh, Lars,

    I am truly sorry. You try to play by the rules, but when the rules are stupid or no longer apply, you gotta do whatever is necessary. You have all the good thoughts I can muster. I looked up Spherocytosis and C-Reative Protein on the net but couldn’t find out much. I would be concerned if her CRP was at all abnormal. Something is going on and they need to find it. I did find one article – www3.utsouthwestern.edu/endocrine/July7.ppt that talked about Thrombosis in relation to those who have there spleen and those who don’t. There are a couple of interesting comments but it is not wholly related. I’ll keep looking. Love, love, love.

  3. Lars,
    I found this on the site SteadyHealth.com. It is not a medical site, but I found her comments enlightening. Maybe you will too. Still looking

    Mom

    sinead2000
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    Joined: 30 Nov 2006
    Posts: 1

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    Posted: 11/30/06 – 03:23 Post subject: re stomach pain and hereditary HS

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    Hiya – saw your post – I have heridarty spherecytosis as well and my gall bladder was finally taken out 1994. My spleen was removed when I was 5 because of the enlargment. One of main symtoms in worsening HS is stomach pain with gall bladder pain and enlarged spleen. When i got my gall bladder out – doc said yep we usually take those out with spleen now for patients with HS as we know they have issues with it as well. My mum has HS and a sister and both their gall bladders are out (later) with spleens (both age 6). My sisters two kids have HS and their doc said that he’ll try not to take spleen out unless necessary but when it does the gall bladder will need to come out as always an issue with patients with HS. Go back to your haemtologist. That may be the issue

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