Wednesday, December 18, 2013

Happy Liver

Just a quick post to update on Alexa's labs and clinic yesterday.

Turns out, Alexa's liver is quite happy right now!  Her LFT's have remained quite stable over the last two check-ups.  They are sitting happily at 48(AST) and 60(ALT).  They are the best they have been in months and SO very close to being in the normal range.  And she has a runny nose! So I am quite pleased with those numbers.  Who am I kidding?  I was ecstatic yesterday at that piece of news.

She finally gained some weight--No surprise there though, as she has a new found appetite that I am just loving!  She plans all her meals way in advance.  Tells me exactly what she is having for snacks and lunch. 
She is not a big fan of meat.  She will eat certain meats, like chicken nuggets, hot dogs, ground meat in pasta or meat loaf. But I don't think she will ever love a big, thick steak.  And I don't really care. 
She finally has a good relationship with food.  She ENJOYS meal and snack times.  Her protein is perfect right now.  She is happy and healthy and gaining the appropriate amount of weight.  So if she decides she never wants a steak, I really don't mind.  She eats plenty of food and quite a variety.  That is more than good enough for me!  My days of fighting with her at meal times are gone. 

She also grew some, which was pretty evident by the lack of pants she owned that covered her ankles.

There is one thing that we will be watching closely--her EBV and CMV levels.  Both of those are common viruses that most of us have.  They remain dormant in most of us, but wreak havoc on an weakend immune system.  Since Alexa's new liver was EBV positive, she was given the gancyclovir and cytogam infusions after transplant to ensure that the viruses remained dormant while her immunosuppression was at it's strongest. 
Since she has finished both medications and her immune system is still being suppressed quite a bit, both viruses have now appeared to become present in her blood.  This is not a huge surprise to us.  The viruses have so far not been replicating themselves.  In fact, the viruses were present in such low numbers that the lab could not measure them.  
It is quite common in transplant kids, but needs to be watched carefully to ensure that they do not get out of control.  Once yesterdays levels are reported back, the hope is that we are able lower her immunosuppression just a tad to see if her body is able to fight off the viruses on it's own.  It is quite a sensitive balancing act. They cannot lower her immunosuppresson too much as that could remind her body that she has a new liver and send her into rejection. 

They have to find the perfect balance between keeping her strong enough to fight the EBV/CMV but not so strong that she will fight her new liver.

It's hard work keeping this liver happy!

But we have a great team and they are doing a good job of monitoring all her levels!

And to show how appreciative we were of their never ending devotion to us, Alexa and I got busy over the weekend baking cupcakes for our great team.

We also decided to take some over to 6A, the transplant ward, where we took up residence in July.

Alexa carried those trays to the nurses and doctors proud as a peacock!  And was super excited at how thankful they were.
Alexa's doctors and nurses work so hard; they are so incredibly busy, making sure that our kiddos get the best treatment possible.  If felt great to show, even in this very small way, how appreciative we are of all they do.  

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