Ashley's Story

She will leave fingerprints all over your heart


Back to the Cycle

Its beginning to look as though we've entered back into the cycle of requiring blood transfusions about every other week.  Ashley's CBC came in this week with critically low hemoglobin and hematocrit levels along with low levels of red blood cells, white blood cells, albumin, and platelets.

No one is looking for a cause, but rather just accepting that this is the place we've come back to.  I think its just assumed its all related to the choleostasis of her liver.  That of course is being caused by her extended dependence on TPN which in turn is necessary because she no longer has a small bowel.

Ugly cycle.

I remember so vividly the early days of Ash's life before transplant where we found ourselves in the middle of this cycle.  Every week or two she was rushed into the hospital for blood transfusions.  It seemed so scary.  So emergent.  So unreal. There were even a few occasions where they loaded us onto an ambulance and sent us all the way to Dallas for a blood transfusion.  Those days were a blur of activity trying to keep her going long enough for the adoption to be processed and become legal and for us to get her listed for transplant.

Now...its just what we do.  No panic, rush, or fear.

The only symptom Ash exhibits these days of needing blood is lethargy.  She requires long, long naps to make it through a day when her blood levels drop so low.  Her average length of nap this week has been about 5 hours.  Some days its only 4.  Some days she rests for up to 6 hours during the middle of the day.

The blood bank is working to prepare blood for her now and then it will be driven here to Longview.  Once the hospital calls to let us know its here we will admit her to the floor and hang out for 5 or 6 hours.  She should be discharged sometime in the middle of the night and we will come home to crawl into our own beds.  I much prefer the way we handle it these days compared to the early ones.  This will be her third hospital admission in 2 weeks. I don't like the pattern I see developing:(

I had hoped the transfusion she needed two weeks ago was just a fluke, but it is proving not to be the case.  The cycle has begun and there is not much we can do to stop it.  So I'll try not to worry about it all and just go with the flow for as long as we can or until her liver recovers from whatever has been going on these past 6 months.  It doesn't help that she has been on very potent, round the clock, doses of IV antibiotic for all but one week out of the last 3 months.  Her liver is struggling to keep up with it all.

Anyway, this week is proving to be just as stressful as I'd feared it would be.  I'm running on about 2 hours of interrupted sleep a night and the lack of rest and stress are going to catch up with me.  I'm tired.  Mostly just physically tired, but I can feel the emotional wear and tear beginning to pile up too.


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