ebv

Good news – Bea’s line came out last week.  With the line removal we also do away with the nurse visits to the house 2x/week (although I miss the actual nurse), flushing the line every day, high risk for infections, all of the medical equipment in her nursery, and my favorite….we get to add bath time!   Since Bea got her line we have basically had to give her sponge baths because her line can’t get wet.  All around – it is a good sign that she is moving forward.

Bad news – Bea has EBV.  EBV is a serious infection that can lead to lymphoma.  

I know.  I can barely sleep over it.

Now, because we don’t have the line, we take Bea to the hospital every week to have her blood drawn and levels tested.  It will be tricky because we’ve moved her Prograf to 7:30am and 7:30pm (the medicine she has to take within the same 10 minutes every day).  We moved it so that I can give it before I head to work and once I get home.  We have to get the blood drawn 30 minutes before her Prograf is due which means I’ll have to leave work, grab Bea, and take her to Children’s once a week at 7pm.

We test for Bea’s EBV level each week and the numbers are climbing rapidly.  We have lowered her Prograf in the hopes that her immune system wakes up enough to fight it off but doesn’t wake up too much that it starts fighting the liver.  A constant balancing act.  A physical and emotionally exhausting balancing act.

We also learned that Bea has blood in her stool so we took her in today (Tuesday) for a CT scan.  They had to put her under (again) to make sure she stayed still for the test.  We got the results back and although her EBV number has dramatically increased, there is no sign of lymphoma.  The blood in her stool is still an indication that the EBV is irritating her intestines so once we meet with Dr Campbell on Friday we will move forward with a plan of action. 

AND on top of it all – I head back to work on Monday.  My company has been so phenomenal and the support I’ve recieved from my co-workers has meant the world to me but I would be lying if I said this transition would be easy.  I thought that by now we would be on a smooth trail and I would be more than ready to head back to work.  Although my mind is itching for something different, I can’t help but worry about this EBV.  I have to keep reminding myself – one day at a time.

Please continue to pray for Beazy and that we can get rid of this EBV sooner than later.

#BEAstrong,

Hillary

[First bath after the line removal.  I would say it was a success!]

[Love our house in the fall]

[My aunt made this for Bea.  Can you believe it?!?!?!?!]

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