Visit to COH Last Week

A trip to COH on Thursdays is awful for us.  Due to the dr having been unavailable on Monday, our only option was Thursday.  When we go on Mondays, it is so much easier because the week has not begun yet.  But going on Thursdays means we have normal life interrupted by that trip.

Fortunately, we were in and out of the clinic very quickly on Thursday.  The lab was busy and we were called about 35 minutes late.  After leaving the lab, we grabbed a snack and ran upstairs to the clinic.  There, we did not even have time to complete our snack before she was called in for vitals.  

As far as vitals were concerned, she was perfect.  Her labs were delayed a bit and so we talked about other things.  I was informed that COH typically starts re-immunizing at 6 months after transplant.  I was surprised by this because of the cyclosporine (immune suppressant) she is on still and will stay on until Jan. 2015.  I declined any vaxes at this appt., said I would do my research and we could talk next time.  Most research I’ve read recommends a flu shot at 6 month after transplant, but no vaccines until after cyclosporine ends.

We discussed flu season and what precautions to take.  The dr does not think a mask is necessary…. I have broken out the OnGuard essential oil blend, put some in a roller bottle for Naomi and instructed her to use it like hand-sanitizer multiple times a day.  She is also very good about keeping her hands away from her face and washing her hands often and well.   

Her labs were delayed by the lab and most were not ready by time we left.  Those that were back were a bit on the low side.  I received a call from the Nurse Practicioner while driving home and learned that her cyclosporine blood levels were nearly double what they should have been and her kidneys are not happy about that.  Her creatinine was over 600.  Usually, they are around 300.  So, we have increased water intake, again.  Poor child.  And decreased her cyclosporine dose.  We go to the Vegas dr next Monday (a week from tomorrow) to have the cyclosporine levels checked again.

It continues to be unnerving to see her labs go up and down repeatedly.  I know this is common after transplant.  I know other parents have lived through it.  I see how active she is and how well she lives and I know the drops are temporary.  Honestly, I cannot wait for the cyclosporine to be gone.  The research all indicates that patients that stay on for 1 year have the best recoveries.

While at COH last week, they drew blood for an engraftment analysis.  That will tell us the percentage of her marrow that is Micayah’s and hers.  Last time, it was 97% and 100%.  There are two different elements of the blood tested.  I am not sure of the difference.  So, I will be curious what it is now.  While her counts were lower than recently normal, her “baby cell” counts were still higher than normal which means her marrow is indeed working very hard.  We like that.  I always wonder how the drive affects her counts, too.  We do not eat as normal that day.  We do not stop for bathroom breaks much.  Our sleep is affected…Etc.  

WBCs 4.0 (normal)

RBC 3.15 (low)

Hg 10.6 (low)

ANC 2600 (normal)

Platelets 139

This time, we do not return to COH for FIVE weeks.  This is the longest gap of time that will pass with us not making that trip since November 2013 when we had our initial consultation there!  

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