bea’s liver.

As you remember from the last several posts, there is no real way to know exactly how the liver is doing unless you biopsy it.  We do labs frequently to see anything major that is going on but just because her blood work says she isn’t rejecting – doesn’t mean her liver is 100% okay.

The reason we would typically biopsy every 5 years (instead of every year or every 6 months) is because they have to put Bea under and it’s taking a little piece of the liver out so the less we can irritate it, the better.  With a procedure like this, you’re also worried about internal bleeding, etc (that is why we have to stay in the hospital overnight).

If all things were normal, we would have waited until she was about 5 and a half to biopsy.  Because she has been fighting the EBV, we’ve had to drastically lower her immunosuppressants – thus making her MUCH more prone to rejection.

It’s all actually so complicated but bottom line, no kid her age is on this low dosage of immunosuppressants and NOT rejecting so we were fearing the worse.

Good news is – GREAT news is – her liver looks surprisingly awesome.  Really really really awesome actually.

Dr Campbell called me yesterday while I was at work and gave me the news that she went and personally looked at the piece of liver under the microscope and it looked healthy.  No giant red flags, nothing really majorly noteworthy.  Just that is looked really really good – a 9.5 out of 10 actually.

What.a.relief.  This means we keep her on her low dosage, we keep fighting the EBV, NO CHEMO, and continue letting her grow and thrive the way she should.  We will continually get labs to make sure this EBV isn’t causing any major issues and right now, it is still relatively low.

Next obstacle to tackle – the lungs.  We are still waiting on results for several tests and will know more in the next few weeks.  In the meantime, we will be celebrating fireside with turkey, family, and friends all weekend long.

And one last thing – thank you to Cincinnati Children’s and all who work there.  We are so proud to be a patient of such an incredible hospital filled with such outstanding, kind, and intelligent staff.   We are also so lucky to have the support and love from the community in Cincinnati and the people who have followed Bea’s journey from the beginning.

We are so lucky to have each of you.

Thank you for the love, the prayers, the good vibes, and the support.

Thank you.

 

#BEAstrong

Hillary

liver & lungs

Hi.

We are finishing up a LONG day at the hospital before heading home to spend the night with Poppy while Jordan stays here with Bea.

So, as many of you read earlier this week, Bea was put under for her liver biopsy and they also tacked on a bronchoscopy.  Jordan took Bea to see Pulmonary (lungs) again last week and because of her chronic congestion and cough, they wanted another bronch done.  She had one several months ago and it showed a lot of mucus in her lungs but none of the results came back with any definitive answers as to why.  It cleared up a little, and the the coughing came back again.

The overall liver procedure went well.  They were able to successfully take out a sample of the liver and they sent it for tests.  Those results will trickle in over the next few weeks and I will definitely keep you all posted on those.  Hoping that we will at least get a general idea as to what the liver looks like tomorrow morning.

The bronch went fine.  They found, again, a ton of mucus in her lungs and it’s really a big mystery as to why.  Like they did last time, they sent the mucus for tests that will hopefully materialize with answers over the next few weeks.  As weird as it sounds, we are really hoping they find something so we have answers and can figure out how to battle this constant congestion and cough.  They are testing for a WIDE range of possible causes so we are obviously praying for something that can be fixed.

She also has been breaking out in hives all day – we are hoping that these flare ups are from her getting all of the medication out of her system.

Overall, today was a lot of tests without a lot of answers and being here at the hospital has brought back a WIDE range of emotions.  We saw 3 of our favorite nurses that cared for Bea right before and after she was transplanted – they actually work in different departments but heard we were coming so visited us in her room.  Seeing their genuine excitement and pride when looking at how much Bea has grown filled my heart to the absolute brim.  When one nurse asked about Dad because she remembered him hanging and chatting with her a lot – literally made me cry.  The smell in the halls, the frequent run for juice and water, the feeling of uncertainty, worry, angst, etc – it seems like a legitimate lifetime ago that we were experiencing all of that the first time.  It almost doesn’t seem like my life – our life.

But, it is.

And just being here with her for a full day puts every single thing into perspective.  What is most important and who is most important.  And going into the holidays, I can’t imagine a better reminder.

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And thank you for all of the thoughts, prayers, and thoughtful gestures.  We are so beyond blessed to be surrounded by an incredibly warm and loving community.

#BEAstrong

Hillary

 

#BEAstrong next week

Hi 🙂

So, we are officially 2+ years post transplant and I never ever ever thought I would say this but 60% of my days I forget that Bea had a liver transplant.

I remember a time where it was all that consumed my thoughts.  My ever waking moments were focused on which nurse was coming to the house and when, what blood test was next and the thousand ways the results could be interpreted.  After transplant, we were living minute by minute with the hopes that we could keep Bea from spending the night in the hospital. And over the last 2 years, 4 months, and 9 days – we’ve succeeded.

Although we are frequent flyers of Cincinnati Childrens Hospital Medical Center, we are there for doctor appointments, blood draws, xrays, CT scans, etc.  We haven’t spent one night in the hospital since she was released from her transplant.

Until Monday.

After transplant, a patient typically has a liver biopsy once every 5 years.  Yes, we can get a pretty good picture of how the liver is doing via blood work – you never know 100% unless you biopsy it.

Althougb Bea’s liver numbers have been pretty solid,  her EBV is still persisting which has made us put her on the lowest dosage of immunosuppressants.  This increases her risk for rejection MAJORLY so we have to biopsy and get a good picture of how this liver is doing.

There can be 2 outcomes.  Outcome #1:  Her liver looks as good as it does in the blood work.  Then, it’s likely we will continue on the low dosage of immunosuppressants in the hopes that the EBV eventually takes a hike.

The second outcome is that there is inflammation in her liver.  Not outward rejection (we would know that from the blood work) but irritation that can lead to rejection.  If her liver looks unhappy AT ALL – we will likely have to increase her immunosuppressants and, thus, the EBV will go crazy.  Because we won’t be able to lower her immunosuppressants without compromising the liver, we will likely head down the chemo path.

SO – prayers.  Prayers, prayers prayers.

We take Bea in on Monday morning, she goes under anesthesia around 9:30am, and then recovers and spends the night in the hospital Monday night.  Ugh.  I am dreading it but am trying to focus on the fact it’ll be good to have a clear picture of the health of her liver.

And, as I’m sure you’d agree – she looks healthy to me!

#BEAstrong

Hillary