Harper's Helpers

Working toward a full, long life.

belly pain returns

Harper’s belly pain returned in full force today.  Got a call late this afternoon from preschool that she was in a lot of pain; arrived to find her doubled over and crying. Scooped her up and drove home.  Thankfully it was a nurse visit day; all vitals, bowel sounds, heart and lungs sounded normal.  Depsite looking dehydrated, Nurse Jo was able to draw enough for the normal labs.  Jo was a trooper; working around Harper’s curled up body on the couch.  We made a plan to stay put and wait for the lab results before deciding to head into the ER.

We settled Harper into the basement for a movie and tried to help her get comfortable.  She was in visible pain and I was choking back tears of empathy, frustration, anger, etc.  The nurse called with lab results ~6p.  Her WBCs had tanked to 2.8 (acceptable school/public place level is >=3).  I described Harper’s current condition…continued pain/crying out.  The nurse waited for more lab results to return, paged the on-call nephrologist (Nahara), and called us back.  Nahara called Amplatz with a heads up and wanted Harper to head on in.  This was 6:30p; I relayed to the nurse that Harper’s pain seemed to have eased within the last 15 minutes.  She was able to sit up.  I asked if we could wait ~hour before deciding.

My delay wasn’t for lack of concern….rather an attempt to protect her from an unnecessary hospital visit.  If her recently increased cellcept dose was the cause (previous belly pain culprit), there’s nothing to be done in the hospital.  As long as she’s still taking food, water, and meds…we opted to stay home for the time being.  Rheault heard through the grapevine about Harper and called ~7:30p.  By this time, Harper appeared to be in no pain, or only a “teeny, tiny bit.”  Rheault agreed that it would be best to watch her through the night and hold off on a hospital-admitting decision until the morning.

For now, the cellcept dose has been dropped back to the original (nearly 1/2 of recommended dose) of 0.75 mL.  Although the cellcept dose was increased very slowly since February’s belly-pain-hospital-stay, Rheault thinks that today’s pain and dropping WBC are indicative of Harper’s tolerable cellcept level.  It’s not likely that an increase to recommended levels will be possible.

Worn out with worry.

Was hoping for an uneventful week leading up to this Saturday’s anniversary of Harper’s initial diagnosis…. will be hoping for a calm and uneventful night for my little girl instead.

zanna

13 Comments

  1. Our prayers are with you tonight.

  2. Glad the belly pain slowly went away so no mor hospitalization was needed. I pray it stays that way. Such an up and down ordeal. Hang in there! Lots of love, Lorraine

  3. Oh Z! This is so hard! All our love and thoughts to all of you!

  4. Oh….hugs to you.

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  6. So if a person is carrying the Torah and drops it, it’s like the worst thing that can happen. The person is supposed to fast for thirty days, but what happens in reality is that thirty people in the community fast for one day to share the burden. I wish worrying worked like that…we would all gladly take a shift if our worrying meant you guys could get a little respite. And some of us are really good worryers, almost as good as you. ;->

    Hugs to all the fam. Judah was calling Gussie on his pretend phone tonight. “Hello, Gussie? Okay.”

  7. We’ll be hoping alongside you. xoxo

  8. Such a hit again today for you all! I’m hoping for a really uneventful night for you and Harper.

  9. Here’s hoping to a peaceful belly! Love you guys!

  10. Update from yesterday:
    Harper slept like a rock last night. She woke up in bright spirits. The belly pain has disappeared just as abruptly as it appeared. Cellcept dose will remain in 1/2 for now. Still uncertain about what that means for the long term, i.e. does this mean a switch to a steroid-protocol? Not ready to ask those questions yet.

    Thanks for the thoughts, messages and prayers yesterday.
    love – zanna

  11. I second Sam’s wish that others could help carry your worry. Take it day by day. There are many in your corner.

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  13. We’re carrying the Torah with you ! Prayers for Harper and you as you deal with the ups and downs of her condition.

    Love,
    Mike & Rosemary