A special way to honor Addie

This video was made for Addie by Aunt Katie.  You have had quite an impact on her heart, Addison Grace.  And your obsession with her makes it clear the impact that she has made in your life, as well.  Katie choose a very appropriate song to express her desire for your life.  And I have to agree, she found one that expresses exactly what daddy and I pray for you every day!  You have defied so many odds, sweet girl, and you continue to kick butts and take names.  And the best is yet to come!!

"I Lived"

One Republic

Hope when you take that jump, you don't fear the fall

Hope when the water rises, you build a wall

Hope when the crowd screams out, they're screaming your name

Hope if everybody runs, you choose to stay

Hope that you fall in love, and it hurts so bad

The only way you can know is give it all you have

And I hope that you don't suffer but take the pain

Hope when the moment comes, you'll say...

I, I did it all

I, I did it all

I owned every second that this world could give

I saw so many places , the things that I did

with every broken bone, I swear I lived

Hope that you spend your days, but they all add up

And when the sun goes down, hope you raise your cup

Oh, I wish that I could witness all your join and and all your pain

But until my moment comes, I'll say

I, I did it all

I, I did it all

I owned every second that this world could give

I saw so many places , the things that I did

with every broken bone, I swear I lived

Uh. A frustrating week!

March 16, 2015 - Last week, at our weekly clinic visit - Addie's liver numbers were slightly elevated. Not terribly elevated - but enough to get some hearts pumping and a concerned medical team.  When liver numbers bump up, especially in the first few months out of transplant - rejection is always a concern. Especially when there is nothing viral going on.  And our team of doctor's at Pittsburgh always error on the side of caution.  They are very proactive and aggressive in Addie's treatment.  I LOVE this about them.

From the same set of labs last week, Addie's prograf level (this is the amount of immunosuppression she has in her blood stream and gives us an idea of how well immune suppressed she is) was 5.8.  Considering they want to keep her level at 10 right now - her level is very low.  This MAY be the reason why her liver numbers are elevated.  So the plan is to increase prograf slightly and increase her steroids so IF she is rejecting - we can stop it right away.  Dr Kyle also ordered an ultrasound for Friday (of last week) to make sure that the liver still looked good and that all of the arteries and bile ducts were flowing nicely (see, I told you they were aggressive).  Thankfully, her liver looked beautiful.  Dr Kyle requested repeat labs for Monday (3/16/2015) morning.

As if this new wasn't enough, as we were walking out of the hospital from the ultrasound, Addie's transplant coordinator found us to tell us that Addie's EBV level was elevated.  Very elevated.  Crap. Seriously?? EBV (or mono) is a virus that most adults either have experienced or have been exposed to.  Most of us carry this virus without issue.  However, for a transplant patient, this virus can reek havoc.  Since it attacks the lymph nodes - in an immune suppressed patient, if left untreated, it can cause a form of lymphoma.  So getting it under control is vital.  Typically, in a transplant patient, EBV is treated by decreasing immunosuppression to allow the body to fight the virus.  Easy enough. Right?? Unless your body is starting to reject its new liver and decreasing immunosuppression would just make the rejection worse.

We repeated labs yesterday and unfortunately, her liver numbers elevated a bit more.  The theory, from last week, that elevated liver numbers were from a low prograf level was void.  Its likely rejection.  So, as of today, the plan is a liver biopsy.  This will allow us to see whats going on with Addie's liver and to make an effective plan with how to move forward.  The frustrating part is that we treat one of these issues - we fuel the other.  So we need to know exactly what we are dealing with and a biopsy will give us a clear picture.  We aren't sure of the details - but a biopsy will be scheduled for later this week.

The feelings of concerned, worried, scared, feeling defeated are coming bursting back into our hearts.  This situation can be treated. It's just a bit more complicated than what we hoped for. (for some reason, Addie likes complicated scenarios).  We will get through this.  Just as we have gotten through all of the other obstacles that we've faced, we will do what it takes to get Addie through this.  We trust that God's in control and that He will continue to show his power.

On the up side, Addie is starting to have much more energy.  She is slowly eating more and it is becoming much harder to keep her down.  Most days, she'd rather play with her sister that sit on the couch.  AND... the girls are even starting to fight with each other.  Sounds silly, but we love seeing things return to normal.  These days, its easy to find joy in the small things.  When life is shaken up - its much easier to be thankful for the things you typically take for granite.  Thats the silver lining, I guess.

One step closer to home

March 5, 2015 - Today was an exciting day for us - Dr. Shindi gave us the go ahead to leave the Ronald McDonald house and head to Ben's dad's house, in Ohio, for the duration of our stay. The drive from East Palestine OH is only about an hour and 10 minutes to CHP and since Addie is 4 weeks post transplant, they were changing clinic from twice a week to once per week.  Dr. Shindi thought it would be good for Addie's recovery to be in a home that is more familiar to her and would provide a more comfortable setting.  As thankful as we were for the Ronald McDonald house - we were ready to move out from our one bedroom apartment.

It was a comfy little apartment...

The Living Room

 The Bedroom

The Kitchen

The View (the very best part)

We were ALL ready to leave.  Even though we weren't going home - this was one step closer to home and a huge step up from Ronald McDonald.  

Smiles all around as we were getting in the car

Grandma Carolyn had dinner ready and waiting for us when we walked in the door.  Dinner was delicious.  Seriously, there is nothing like a home cooked meal, especially when Grandma makes it.  Even Addie had a plate of chicken - and she LOVED it!

Have I mentioned how thankful we are for our families?? We honestly couldn't get through this journey without the love and support that our family has provided.  From phone calls, to texts, to cards, to visits, to opening up their home for us to live for a few weeks.  I couldn't ask for a better family.  We are blessed beyond words.  

A little perspective

Life isn't always fair.  Things don't always make sense.  And when you think that your struggle sucks and your situation feels very heavy, I can promise you that someone else is going through something worse than you. Sitting in a children's hospital, watching kids fight for their lives - shows me how true these statements are.

For the past 3 weeks, my life has been filled with watching kids fight to stay alive.  It just doesn't seem fair.  I've spent a lot of time talking to other parents that have been in the hospital for twice or three times as long as we have and who have no end in sight.  It makes my heart sad.  And honestly, if I'd allow it, this could make me really angry.  So I've had to learn to see beyond this sadness and be thankful that God's allowed me to experience this part of life.

I began to learn, at the young age of 16, how precious life is and how quickly it can be taken away- when my mom was diagnosed with brain cancer.  After my mom died - I kinda thought that I had a golden ticket to get through the rest of life because our family had gone through enough.  And then Addie was born and I knew my theory was void.

So, I've learned to be thankful for every thing that life throws at me.  To hold our good days tightly and find value in the bad ones.  To trust that God's allowing every single I've walked through into my life for a purpose.  I may not always be happy about the situation I am in, but if I hold tight to Him - He will carry me through it.

To be very honest, there were more days than not, since we transplanted Addison, that I wondered if we made the right decision.  We watched her fight like a little warrior in battle.  We watched her cry from pain and were not able to do anything to make her feel better.  We watched her feel crazy in her head because of the narcotics she was taking.  We watched her body shake uncontrollably from the new meds she needs to take to keep her new liver happy.  This journey has been hard.  In fact, about a week after Addie's transplant, I was walking to the hospital from the Ronald McDonald house (it was my night to get some sleep in a bed) and just feeling angry with myself for making the decision to transplant her.  Almost regretting our decision.  And as I walked into to Addie's hospital room, the surgeon that transplanted Addie followed me into her room.  He told us that he finally got to see Addie's old liver.  And it was ugly.  Not only was it 4 lbs (a normal 5 year old liver is around 2 lbs) and huge - it also had scar tissue all the way through it and was beginning to cirrhos.  He said "you choose to do this transplant at the perfect time.  If you would have waited any longer, her arteries and ducts would have also started to cirrhos - making her transplant an extremely hard procedure."  Not to mention, that she would have started to become a very sick little girl.  I looked at Ben and shook my head.  So we really had no choice.  We made this decision because God knew this is what her little body needed and this was how He was going to save her.  Her metabolic doctor's told us from the time she was a baby - that she would need a transplant some day.  They just wanted her to be older before we went down this path.  So we made this decision several month ago because this was the path that was laid out for Addie.  And not because WE said so.

So the icing on the cake was as we actually got to see Addie's old liver this week.  We got to see first hand how awful her liver really was.  And just how much she needed a new one.  Thank you God for your faithfulness!

Look at the size of this belly.  It was ALL liver.

We truly have no idea how it all fit in there.  The surgeon said he had to cut her belly 60% bigger than what he initially thought, just so he could get it out.

This the entire liver 

The liver on the left is a normal, healthy 5 year old liver.  The liver on the right is Addie's (its actually  just a slice).

Addie touched it!!

And when Ben held her old liver up to her, it becomes clear how much space that thing must have taken up.  

Even Alivia got to join in the fun

Discharged

February 20, 2015

After Addie's biopsy and the insertion of the ND tube - Addison hit a wall.  She started to withdrawal from us.  She stopped talking and would barley look at us.  She was telling us (without using words) that she was done.  We rocked her world and she had no say in it, so now she is showing us her anger by withdrawing.  We were not prepared for this.  We were prepared for the pain and for her not wanting to eat and for her to feel like crap for a few weeks.  But we were not prepared for Addie to get angry and withdraw from us.  But as we've done with every other step of this journey, we did our best to just be what Addie needed.  Even if that meant, letting her alone and giving her a tiny bit of space.

Her team also saw a difference in Addie and heard our concerns so their solution was to discharge her. Her liver numbers where looking so much better since we started treating her sinus infection and we had the ND tube in place to give her nutrition and hydration so there was honestly no reason to keep her inpatient.  Especially because their experience showed that kids do much better recovering outside of the hospital. And they were only discharging her to the Ronald McDonald house which is directly connected to the hospital.  So if we needed anything, they weren't too far away.

Ben and I certainly weren't feeling ready for this.  We figured after the set back this week- they would want to keep a close eye on her.  So we were a bit surprised as they started pushing to get her out of the hospital.  We were very nervous about working the ND tube and administering all of the new meds (she was on 8 new meds at the time of discharge) on our own.  And we debated whether or not this was truly the best decision.  But we knew, at some point - we'd have to put one foot infront of the other and learn how to walk this path.  We knew that because we were doing this together, we would be perfectly fine.  And this would feel just as scary if we waited a few more days to take this step.  So we did it.  We walked our little girl out of the hospital just 16 days after a liver transplant.  We needed to try to find our new normal and to give Addie the chance to finally feel like she could just heal and recover in a safe place that only included her family.

 

Is this rejection?

February 18, 2015 - Addie's liver numbers are not behaving very well.  Starting on Saturday, February 14th - Addie started to have a very sore throat.  We first noticed her discomfort because she started gaging and throwing up all of the liquids were were putting in her mouth.  Prior to Saturday, she was taking small sips of formula throughout the day with no problem.  So we thought it seemed quite strange that she was refusing her formula.  Around the same time this throat issue started, her LFT's plateaued.  For the past week and a half, her liver number's were trending down and almost in the normal range.  We didn't think much of this plateau because her liver numbers right now are better than they ever were pre-transplant.  But her team wasn't thrilled by this.

We drew labs Sunday morning (we draw labs every day) and her team's inkling was correct - her liver numbers started to elevate.  Both of her LFT's bummed up about 50 points.  Defiantly not in the "scary" range - but we didn't want to see them trend this direction already.  Dr. Kyle wanted to take a proactive and aggressive approach - thinking she was starting to reject and he wanted to stop it, so he gave her a big bolus of steriods. But until we knew for sure what was happening to her new liver, the plan was to watch and see what her LFT's were gonna do over the next day or two.

The bolus of steroids didn't help.  By Monday, they continued to elevate.

Addie also continued to feel more and more sick.  Her throat hurt her so badly that she could only cry and moan from the pain.  Poor sweet girl.  The doctor's did all kind of cultures to see if she was sick with a cold, flu, or other type of virus.  But everything came back negative.  Our next thought was strep.

By now, the doctor's were thinking that her body was starting to reject this new liver.  They weren't AT ALL concerned about this because in the first 6 - 8 weeks after transplant, about 80% of patients reject.  They actually expect it when a healthy kid gets a transplant because it simply means their immune system is doing its job.  This doesn't mean that Addie will need a new liver - it just means they need to use some heavy hitter immunosuppression drugs to stop her immune system from attacking the new liver.  This is our new battle - the fine line between giving her enough of an immune system to fight against infection but not to fight her new liver.  Thank God we have a team of doctor's that have given their entire life to learning about liver transplants and rejections and have written research papers and have lead the transplant community in successful liver transplants.  We trust them.  And we trust that God's driving this ship.  So we knew that whatever they wanted to do with Addie, they could fix what her body was doing.

The recommendation was for a liver biopsy.  This would show us exactly what was happening in her liver and exactly how they needed to fix it.  So Tuesday, February 18th, Addie had her first liver biopsy.  Since Addie would need to be under anesthesia, again - we also asked ENT to do a scope so we could figure out what is going on in Addie's throat (which included a strep culture).  We also asked them to insert an ND tube.  This would allow us to feed Addie without her needing to eat or drink.  This was not at all what we expected Addie would need, but she has gone for about 3 days with barley anything to eat or drink.  By now she was extreamly dehydrated and had barely any energy.  She needed help - and this is the only way we knew how to help her.

 
Everything went well in IR.  ENT did their scope, the ND Tube was place, and the liver biopsy was done.  It took about an hour and a half and she was finished.  Back in her room on 7B and resting comfortably.

It took 24 hours for the results of the biospy to come back- and it showed NO signs of rejection.  Thank you God.  So what, then, made her LFT's respond the way they did...... A sinus infection.  Addie has low muscle tone (a direct effect from her initial crisis when she was 3 days old and her ammonia hit 2100) which has also given her a very weak cough.  During her transplant, the surgeons pumped Addie full of fluids and also inserted a breathing tube.  Both scenarios left Addie with a bit of congestion that she needed to clear.  So combined with Addie laying in a hospital bed and her weak cough - the congestion hung out and grew bacteria and became infected.  So the treatment was easy, start ammoxicillian.

Sounds easy enough.  But I'm honestly so tired of watching her fight so hard to feel better.  This journey is harder than I imagined.  It is a very helpless feeling for your mommy and daddy!

Valentine's Weekend

February 14, 2015 - We had a lot of visitors this weekend.  Alivia finally had someone to play with and keep her distracted from the heaviness of what she's been walking through the past couple of weeks.  Alivia has such a strong desire to be with us and help Addie to heal.  In so many ways, she is mature beyond her years - especially when it comes to Addie.  So the distraction that Teagan brought this weekend was much needed and allowed Alivia to feel 9 again.  We also got to spend time with our family from Ohio, which means Alivia also got to see her cousin, Sarah.  We are so thankful for family!