Day +54

We had some very disappointing news today.  All of Naomi’s counts fell significantly.  I anticipated it because her legs were quite sore and she asked for a wheelchair to walk in there.  While the other children ran and played, she sat in the stroller or on the lion statue, but did not seem interested in running around.

She had a fairly busy week last week.  So, maybe it is just that she needs to rebuild after being so active and playing so much?  We will be monitoring her labs more closely again and head back to COH again this week.

For the past few weeks, her cyclosporine levels were below therapeutic level.  Her dr was not wanting to increase the levels though because her creatinine levels were very high.  Creatinine affects the body’s ability to absorb cyclosporine.  We were waiting for the creatinine levels to lower so we could see what the cyclosporine levels actually were.  Today, her creatinine levels were in normal range, and her cyclosporine was still low.  So, her cyclosporine dose is now being increased.

Also, her potassium levels have been consistently high.  So, our clinic appt was extended today to deal with that.  After we sat in the field, we went for her appt with the dr.  The dr wanted to retest her potassium.  So, we did.  After waiting another hour for results, we found that her potassium went even higher than it was in the morning.  So, she was given a milkshake medicine to drink to help her body excrete it.

Tomorrow, we have to return to have her potassium levels checked again.  She may need to repeat that medicine.  Also, she is restricted from all potassium-heavy foods: avocados, bananas, coconut water and milk… things she really likes.

Then, we will return to COH again on Thursday for another check on her levels.  Today has been so disappointing.  We have been so blessed with her progress-to-date that this decrease in her counts feels like a bucket of ice water.  We always knew fluctuations could happen, but these counts seem drastic.  Her RBCs are lower than the day she was discharged, and her last transfusion was given at 8.2 hemoglobin.  Today, she was at 8.3.  Her WBCs are slightly higher than they were the last time she was without G-CFS for this long.  ANC was 300.  Now it is 500.

The dr also sent for a chimerism test today to determine what amount of her cells are Micayah’s and what percent are still her own.  The best news was that the dr was not concerned about the bloody nostril issue.  She believes that it is just dry sinuses.

noun – the fact or power of enduring an unpleasant or difficult process or situation without giving way.
noun – the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.
noun – a feeling of expectation and desire for a certain thing to happen.
archaic – a feeling of trust.
verb – to want something to happen or be the case.
My hope lies in the fact that recovery from a BMT can take years.  We were told that counts could fluctuate.  Her biopsy on Day +30 indicated that her engrafting was good.  Thank you for all the prayers and support.

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