The Other Family

The main purpose of this blog is for Addie to be able to look back over her journey when she is a teenager, a young adult, a mom, or an old lady and be proud of how hard she fought and how far she has come.  I want her to be able to feel the emotion of her journey because at 5 years old, she can't understand how brave she is!  I pray that she never takes her gift for granted.  There are some really happy and exciting parts of her journey.  And there are some really sad and scary parts.  What I'm writing about in this post is the sad stuff.  I've debated whether this is appropriate and whether some day Addie will appreciate my words and my feelings.  And the truth of the matter is, this is part of her life.  There was another family affected by Addie's transplant as much as or more than our family.  And I want Addie to appreciate that some day.  I pray that she honors her gift and always continues to fight as hard as she can to protect her gift for the rest of her long and healthy life!!  

Our lives changed forever at 1:46 am on Tuesday February 3rd.  This was the time that we got a phone call from Pittsburgh hospital telling us that they had a possible liver for Addie.

Over the past several weeks, I've spent a lot of time thinking about the other family that was greatly affected by this phone call too.  Because see, when we got this phone call from Pittsburgh at 1:46 in the morning - it meant that a family was sitting with their child and trying to prepare themselves to say good bye.  They were going to have to watch as he took his last breath and no longer have the ability to hear him laugh or watch him grow up.  This breaks my heart.

Without sharing too many details - Addie's liver came from a little boy in Philadelphia.  He didn't suffer, he wasn't sick, he didn't have time to hug his momma and say goodbye to her.  He was there one minute and gone the next.  This is one of those things about life that I just don't understand. A child.  A little person who barely had a chance to live his life.  

I can't understand what the other family and especially the other mother was feeling that morning.  I can't relate to her and I can't even pretend to try.  As mom's, our natural reaction is to protect our kids from feeling an ounce of pain and to hold on them until the pain is gone.  I wanted to do that with Addie in the moments after this phone call - and I imagine that his momma was feeling the same way about her son.  The day of Addie's transplant, the OR time kept getting pushed back.  The first OR time we were given was 2:00 in the afternoon. It was pushed back to 6:00 in the evening and even further till 10:00 in the evening till they finally took her at 2:30 in the morning.  I don't know details of why the surgery kept getting pushed back.  I know the placement process of organs is a big deal and takes a lot of coordinating and matching between the donor's hospital and the recipient's hospital.  And if the donor is healthy enough, they can use all of their organs and place them with people waiting for a better life.  So this process could have certainly played a part in the delay of Addie's surgery.  But I also know that Gift of Life can't begin the procurement process until the family is ready.  How in the world can a momma ever be ready for what comes next for her dying child. So as we waited, I kept reminding myself that it was not in vein.  Our wait was nothing compared to what this other family was facing.

I can clearly remember at one point, during our wait, Dr. Kyle - who was flying to get Addie's new liver came in to see how we were.  I started expressing  my concerns about the little guy in Philadelphia and what his family was going through.  And Dr Kyle, by no means, was trying to be heartless- but reminded me that our focus needed to be on Addie.  In a few hours, she was going to walk through the toughest journey of her life and she needed us to stay positive and to be supportive. Sadly, our worries or concerns weren't going to change the situation in Philadelphia and it would do our family no good.  It was good advice.  And I turned that worry off for the moment.

But now, as I've watched my child run around the yard and play with her sister and pick up sticks with her daddy and dig in the garden with me - I can't turn that sadness off.  Don't get me wrong, I'm grateful for the gift that his family gave us.  But I can't imagine what the other family is going through.  I can't imagine how hard life is to move forward without your child.  I can't imagine the pain that they must feel on a daily basis.   

How do I ever express the gratitude in my heart to a family that has experienced so much loss?  Is saying THANK YOU enough?  Because the truth is, if all aspects of life were completely our choice - I doubt that this family wouldn't have chosen death so my little girl could have life.  But because of the choice that they were forced to make - they have given my Addie things that no one else has ever been able to give her.  And for that choice, I say thank you.  You have given Addie a life that I never imagined was possible.  Your gift has given Addie the ability to play outside and not be falling all over the yard because she has terrible coordination from fluctuating ammonia and high ASA levels.  Your gift has given her the ability to think clearly and wake up in the morning without a fog over her brain.  Your gift has given my child cognitive skills so she can play and think and create like she's never been able to do before.  Your gift has given her the ability to eat whatever she wants - whenever she wants.  Your gift has given us the ability to have a conversation with Addie without her needing to stop and collect her thoughts in order to form a sentence.  Your gift has given truly my child a better life. I am humbled and thankful.  My promise is that I will protect and honor this gift and the piece of your son that is still alive in Addie the best way that I can - every day of my life!  

HOME!!

April 3, 2015 - Two months, to the day we are FINALLY heading home.  Addie's team wanted to watch what her liver was going to do for 2 weeks after her bout of rejection.  Since she continued to respond beautifully - they were ready to start us on the next leg of this journey....home.

As excited as we were to be going home - it wasn't without tears.  We were sad to be leaving our family in Ohio.  My in-laws graciously opened their home to us for an entire month and never complained.  They never complained because the girls were too loud or taking over the TV.  They never complained about us turning their home into a mini hospital with all of Addie's meds and hospital equipment.  Instead, they made sure we were comfortable, snuggled and played with our kids, encouraged us as we walked through our fears, and created bonds that are not able to be broken.  We are thankful for the hidden blessing that we found in getting to spend an entire month with them despite the reason for us being there.  They made their house our home away from home.  They gave us the ability to just take care of Addie and not worry about anything other than that job.

So even with many tears - we packed 2 months worth of clothing, gifts, hospital equipment, and toys and began our journey for home.  If it would have been up to Addie, we would have come home on Wednesday rather than Friday.  As soon as her transplant coordinator called on Wednesday to tell us that her labs were beautiful and they were going to discharge her - Addie said "ok guys, put your shoes on and lets go."  Bless her heart!  From the moment she first opened her eyes in the PICU hours after her transplant - she began to ask if we could go home.  And she never stopped asking.  Every single day she asked to go home.  Because home for her meant she was safe.  It meant she wasn't going to be stuck with needles or put through procedures or have strange people walking into her hospital room at all hours of the day/night.  It meant that all was right in her world and she was safe.

So today was the day that we got to honor her request and take her home.

Katie, Ang, Greg, Tanner and Tyler all stood in our driveway to give us a big WELCOME HOME.  They cheered as we drove up our street and jumped for joy as we pulled in the driveway.  They ran into our arms and hugged us like they were never gonna let us go.

We are lucky to have a phenomenal family in Ohio and in Spring Grove.  Our Spring Grove family worked hard to make sure that we walked into a warm and clean home.  Our brother-in-law, Greg, took excellent care of things at our house while we were gone.  He stopped at our house on  a weekly basis to make sure that things were safe.  And a few days before we came home - he made sure our heat worked (which it didn't - but he got it fixed for us).  Our sweet friend, Cheryl, gave us one of the greatest gifts she could have given us... She cleaned our house!! And it looked beautiful!!  My mother-in-law washed our sheets and made our beds.  Ang made signs and created a space that Addie would be excited to see and Katie got us groceries to get us through the our first couple of days home.  Yep - we are blessed.

There truly is no place like home.

Rejection

March 20, 2015 - The results from the biopsy came back and Addie is indeed rejecting.  Her transplant coordinator called with the results on Friday afternoon and asked us to come to the hospital that evening.  The plan was to start a round of high dose IV steroids to stop the rejection and to step her down off of them over the next several weeks.

We got the hospital around 7 PM and around 9 PM they were ready to start the bolus steroids.  The transplant fellow told us to except a very emotional little girl over the next few days because steroids tend to make kids emotional, crabby, and (hopefully) hungry.  They administered the first round of steroids around 9 PM Friday evening and every 4 hours after that for the next 24 hours.  By 4 AM Saturday morning - the steroids already began to do their job as Addie's liver functions tests were already much lower!!

About 80% of liver transplant recipients reject within the first 8 weeks after surgery.  Believe it or not, this is not a bad thing.  Its shows that Addie's body is doing its job.  That her immune system works well enough to fight the new liver and to try to attack it to get rid of it.  And sadly, this isn't a once and done thing.  Addie's immune system will continue to want to attack and "kill" her new liver.  Addie will need to have labs done weekly (to start and as the weeks and months pass, we can spread them out) so her team can watch her liver functions and adjust her immunosuppression medication if needed.  Its a balancing act.  We don't want to suppress her immune system too much - but we don't want her liver to reject either.  Thank God we have a team of doctors that are experts in liver transplants and know exactly how to handle this!!

By Saturday afternoon we started to notice that about an hour after the steroids were administered - Addie didn't become grouchy, she actually became hyper.  It was hilarious!  She'd literally ran around the halls of the hospital and yelled and giggled.  We loved it.  This was a very welcomed behavior after the past 7 weeks of Addie lacking energy.

Addie's liver continued to respond nicely to the steroids.  By Monday morning, Dr. Shindi was so please that he started talking discharge.  He wanted to take her off of the IV steroids and switch her to pill form so we could start our transition to discharge.  He wanted to see what her labs looked like on Tuesday morning - and if they were good, he was kicking us out!!  He was also talking about pulling Addie's ND tube - which was terrifying because we still had a little girl that didn't want to eat or drink.  But from his experience, he finds that kids start to depend on the ND tubes for nutrition and hydration and won't do much eating or drinking until they are out.  Worse case scenario - we put it back in (easy for him to say...).  So Ben and I discussed Dr. Shindi's suggestion and decided to give it a try.

Addie's liver numbers were close to normal by Tuesday morning so her team started the paperwork for discharge.  And as the team was working on discharge papers - our favorite Physican Assistant, Tammy, came in and pulled Addie's NG tube.  Luckily for me, I have a husband that can handle watching these types of things - because when I know Addie is going to be in discomfort, I have trouble watching.  So, I stood by the door and Ben sat with Addie and with a little whine - and a cough,  it was out.  Just look at that beautiful face.

Big sister

Yep - I am gonna brag about my kids (well, more about Alivia).

I think my kids are two of the most phenomenal people on the face of the earth.  Not only do I think they have the coolest personalities - I think they are pretty stinking cute too.  I am not sure how Ben and I are so lucky to be blessed with the two greatest kids around - but for some reason, we were and I am so incredibly thankful for their lives.

Ben and I waited until Alivia was 3 before we decided to try for another baby.

I worried that we waited too long and that our girls wouldn't be close because there were so many years between them. But that certainly wasn't the case.  Alivia was thrilled when we found out we were pregnant with Addie and she was even more excited when she found out that our new baby was a girl and that she was going to have a sister.  And from the first moment they met - they formed the type of bond that every sister should share.  It is incredible.

Alivia has always played the big sister role quite well.  She loves to be mother hen and she loves to help in any way that she can with Addie.  This has been true since Addie was a baby.  Alivia always wanted to help feed her bottles and change her diaper and help put her to sleep.  Whatever we were doing with Addie, Alivia wanted to be involved.

Over the past several months, as much of the focus as been on Addie - Alivia was ok with taking the back seat.  She has never complained about Addie being the center of attention.  She never complained about all of the extra gifts Addie was getting or the events that were held to honor her sister.  Instead, Alivia was proud.  She held Addie's hand, held her head high, and honored her sister. It is really quite amazing.

Alivia has shown an incredible amount of maturity and selflessness over the past 2 months.  She cried with as as we watch Addie being rolled into the OR.  She sat up, all night, with us as we waited for Addie to get out of surgery.

She sat in Addie's hospital room with us day after day and never complained of being bored (and believe me - at times, it was really boring) or finding something else to do or not having friends to play with.  Instead, she encouraged Addie.  She was ready to give lots of hugs to who ever needed one, and her kept her sense of humor that kept us all smiling and laughing.  She snuggled in Addie's hospital bed with her (when Addie would allow her to) and willingly gave her big sister hug's and kisses. She cheered for Addie as she took her first steps (after her transplant).  She encouraged Addie to take bites of food and sips of drinks.  She was the true meaning of support. She was ok with being whatever it was that Addie needed.  In fact, when family members that came to visit asked her if she wanted to go with them for a change of scenery - her response was always "no thank you.  My sister needs me here with her."  

She is one amazing little girl.  She loves her sister in a way that only a sister can.  We are honored and grateful that she is ours.  And Addie is lucky to have one heck of a big sister!

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!

Our special vistor

February 13, 2015 - Today, I had one of the greatest surprises of my life.  My very sweet, loyal, and exceptional friend from Boston surprised me with a visit.  I had no idea that Michelle was coming and I cried like a baby when she walked into Addie's room.  I consider Michelle to be a living, breathing angel.  I was introduced to Michelle 5 years ago, before Addie's 1st birthday, by the President of the National Urea Cycle Foundation.  I was looking for someone to connect with.  Someone that understood what life felt like to have a child with Addison's disorder.  And God answered my prayer.  He sent me Michelle.  Michelle has a little girl with the exact same disorder as Addie.  Her little girl is 6 and was transplanted last year in Pittsburgh also.

Over the past 5 years, Michelle and I have become more like family than friends (and this is someone that until today, I've only actually met 1 time, all of our communication has been over the phone).  She's held me up when I was scared out of my mind.  She's given me advice to help me through some of my worst days.  And she's understands what I am feeling without having to say a word.  So as our family is walking through one of the scariest journeys of our lives - she flies to Pittsburgh from Boston, because she knew how much I needed her.

Michelle spent the weekend with us.  She ended up getting stuck in Pittsburgh an extra day because her flight to Boston was cancelled due to another blizzard that New England was getting hammered with.  See, God really does give us exactly what we need -even when we don't ask for it.

Our first day "out"

February 12, 2015 - Since Addie hasn't had much of an appetite since her transplant, the PA on the transplant service suggested trying some of Addie's old formula.  Since this was such a "normal" thing for Addie pre-transplant, they are thinking it will bring comfort to Addie and will allow us to get nutrition in her this way.  Addie did fairly well with the formula.  Again, we are taking it slow - but at least she is taking it without too much fuss.

The pulled her IV fluids down for 4 hours this evening and they gave Addie a pass so we could go to the Ronald McDonald house for a little.  They have found that when kids are discharged from the hospital, they actually do much better and progress much faster.  So, since we have a room (more like a small apartment) at the Ronald McDonald House - we took Addie to our room for a few hours.  We were so excited to be out of the hospital room for a little and to feel a little more relaxed!  Addie still doesn't have a lot of energy, so by the time we got there (even though we pushed her in a wheel chair)- she was exhausted and just wanted to snuggle on the couch.  Which was fine by me!

Post op - Day 7

February 11, 2015 - Addie is one week post a LIVER TRANSPLANT.  This is just unbelievable!  It blows my mind that Addie has a liver in her body that is working and doing exactly what it is supposed to be doing- that one week ago was in the body of another person.  Crazy!!

Today wasn't one of Addie's best days.  She developed another gas bubble and has a lot of discomfort and pain.  She had a terrible night sleep!  The treatment plan this time was mylicon (to try to pass the gas on her own) and taking walks.    She isn't allowed to eat or drink anything until the gas bubble dissolves because the bubble is blocking the bottom of her stomach and won't allow anything to pass. So we took a lot of walks today.  Little miss wasn't too happy about us keep dragging her out of bed - but we did it anyway  Believe it or not, sometimes mom and dad do know what is best.  I guess we wore her out because she ended up falling asleep on daddy's lap.  We did have to continue giving a few doses of mylicon - but eventually, we got the gas bubble moving!!

Post op - Day 6

February 10, 2015 - The word for today was "eat".  This was our focus.  Since her NG tube came out, she needs to eat.  Today Addie tried her first bite of chipped ham.  I was actually eating a ham and cheese sandwich and she asked for a bite.  Without hesitation we gave her a tiny bite.  Addie's reaction...... "I love ham".  Haha, all of these years without meat - and the kid loves it.  She eat a few more bites until she was done.  She also tried string cheese for the first time - and you guessed it, she loved this too.  We are trying to encourage small bites and small portions since she's gone for so many days without food in her tummy.

The doctor's are trying to wean down Addie's TPN so she starts to develop hunger cues - so they took her off her IV's for 2 hours today.  Addie was very excited to be "free" from her IV's.  We ran through the halls without dragging the IV pull behind us!