my liver lover update

THANK YOU for all of the prayers being sent our way.  This was a tough week I think especially because we were coming off of such a “care free” week away and were extremely optimistic that the “care free” attitude would continue.  

Does it EVER when you have kids? 🙂

We (meaning Jordan) took Bea in for a blood draw on Tuesday night and the results came back on Wednesday.  Her liver looked happy and her EBV was dropped down from 47,000 to 27,000.  Thank God.  The tests also revealed that her CBC – eosinophils was high (22%).  These are allergy type cells that mean she could be allergic to something.  More on that in a minute.

SO – After we got the results I had to head over for my 6ish month post transplant check up with my lead liver surgeon and all checked out A-okay.  Blood work came back that everything looked good and he said that the only real aftermath of the surgery will be my incision.  Could be a lot worse and according to Jordan – “it is badass”.  I’ll take it.  🙂

On Thursday I took Bea in to see her doctor and discuss our game plan.  Although the EBV is down we want it GONE so we lowered her Prograf (the medication that lowers her immune system) in the MORNING and will keep it the same at night.  Again, in the hopes we wake up her system enough to fight the EBV off but don’t wake it enough to fight the liver off.  Always a delicate balance.  She also said that just because her numbers jump from 30,000 to 47,000 to 27,000 doesn’t necessarily mean it is getting any better or worse.  The numbers aren’t 100% accurate…the only time we get VERY concerned is when it jumps from 1,000 to 30,000 to 100,000 to 200,000, etc.  We definitely had room to worry when it jumped from 1,000 to 30,000 before we left for our trip.

The allergy.  Through earlier testing and a couple warning signs, Bea is potentially allergic to eggs.  We’ve cut eggs out for awhile but now she may be allergic to…..brace yourself….peanuts.  I may have a kid with a peanut allergy.

I am still holding my breath that this isn’t the case or she will grow out of it (two likely options) so stayed tuned on that front.

ANYWHO – we are, again, back to weekly blood draws and lab results.  We go again next Thursday (results Friday) and hope that her EBV is down but her liver numbers are stable.  Please add those two things to your prayers and also add another child who I met that is waiting for a liver while his mom gets worked up.  

#BEAstrong

Hillary

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