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!

Post op - Day 5

February 9, 2015 - Addie had another busy day.  She is starting to transition from an IV to taking things orally.  The goal is to get her off of her IV so we can head toward discharge.  Although Addie doesn't have a great appetite, she is eating a few bits of things here and there.  She had some cheerios for breakfast, a few bites of yogurt for lunch, and a few bites of banana's for dinner.  She is also drinking small sips of gatorade.  These are all things she ate pre-transplant, but we figured we start with foods that she is familiar with so we don't turn her off from eating all together.  The exciting part was that we didn't have to weigh ANY of these foods on a scale or try to re-caculate what she didn't eat so we could adjust the amount of protein from her daily intake.  This is a big deal for us because this is all we've known for the past 5 years.

Addie's goal in PT today was to walk.  The PT got Addie out of bed and had her walk around the room a little.  We started to head toward the door to go down the hall and Addie very much declined. She told us "I want my BED.  I DO NOT want to take a walk".  With a little encouragement, we ended up in the playroom.  It was a beautiful site.  She did great walking.  A little unsteady on her feet and we supported from both sides - but she made it, all the way down to the play room.  And once we got there - her face lit up and she was a happy girl.  Addie has true meaning of "bed head" - and yes, there are big knots all through her hair (we tried keeping braids in her hair, but she got a bath and the braid came out).  We woke a beast.  Once she started walking and had a little more confidence in herself - she asked to keep taking walks.  Yay Addie!!

Addie is still experiencing night terrors.  Not quite as bad as yesterday through the night - but she continues to wake up very scared and yelling out in fear.  Poor thing.  We did discontinue one of her very strong pain meds (dilaudide - similar to morphine) and started oxy-codiene.  We are hoping the transition will minimize these night terrors and help her little body to get some much needed rest.

The child life team stopped in for a visit today.  They brought dolls that the girls could play pretend doctor with.  They got to start IV's (without the needle) and put band-aides on and listen to their heart beats and give shots to.  Both girls really enjoyed this activity!  Before Addie "inserted" the baby's IV - she knew she needed to put a tourniquet around the baby's leg first and she removed the tourniquet after the IV was placed.  The kid knows how to start and IV.  I'm not sure if this is really cute or really sad.  We will go with really cute!

Snuggles with sissy

Can you tell we are excited about her walking?!

Post op - day 4

February 8, 2015 - Narcotics are no joke.  They are like a double edged sword - they do their job at managing pain, but they come with some nasty side effects.  Addie is experiencing night terrors.  A combination of all of the narcotics that she is getting and everything she has gone through and being in the ICU and Dr's and nurses waking her and poking at her.  She didn't get much sleep last night because she would wake up screaming, trying to climb out of bed, and looking terrified.  I literally had to restrain her because I didn't want her to hurt herself.  It is very scary for us to watch.  She is also starting to have some jerking movements and jerks herself awake.  Sadly, these are normal side effects of this surgery.  During one of her episodes throughout the night, she ripped her NG tube out of her nose.  Not a huge deal - but this means she needs to start eating and drinking on her own.  We were able to start with small sips of gatorade and few bites of jello and a few bites of ice.

On a positive note, Addie finally stood up today and took a small walk.  She was very shaky and very scared (we expected nothing less, she hadn't used any of her muscles to walk in 5 days).  Daddy helped her stand and they walked from her bed to the couch in her room.  Baby steps!  But a very big accomplishment for the day!

Addison enjoys doing crafts.  She loves to do them when she is not in the hospital, so right now - they are comforting for her!  Today she worked on coloring and playing play-doh.  These things are very good distractions for her.

Post op - day 3

February 7, 2015 - Today was a good day for Addie.  She is still in quite a bit of pain and fairly uncomfortable, but the pain today seemed better than yesterday!  Addie had her very first poop today post-transplant.  This is such a silly update for me to report but for us - this was a big thing!!  Pooping means her bowels are finally starting to work properly and the gas bubble is passing through which should give Addie a bit more relief.  We honestly cheered for her!  Haha!  We are crazy!  She did need a unit of blood today because some of her blood counts were low and not coming up since her transplant- but this is very common after such a major surgery.

Addie started Physical Therapy - to help get her moving in a safe manor.  The goal for today was for her to sit in a chair.  Although she wasn't thrilled about this idea, once we got her in the chair, she did just fine.  She also was able to sit on the edge of the bed.  Although sitting in a chair may seem a bit more advanced, sitting on the edge of the bed takes a bit more core muscles and was actually a more difficult task.  She again, wasn't happy about this task - but she did it like a champ!

Alivia has been waiting very patiently to be able to play with her sister.  She prays every day that Addie gets better enough to play today.  She also talks frequently about the cute things that Addie does or says on a day to day basis that she misses right now, while she's feeling like crap.  So the fact that they got to play play-doh together today, was a highlight for Alivia.  She jumped right in bed with her and they played for a long time.  

We are praying for less pain and a desire and willingness to be able to get out of bed and walk tomorrow!!  You are making such great progress Addie and We are so proud of you, sweety!!

Post op, Day 2

February 6, 2015 - Addie had a very rough night.  She was uncomfortable most of the night and had a lot of belly paid.  Since Addie isn't eating or drinking anything by mouth, she formed a fairly large gas bubble in her intestines (an x-ray showed us this bubble).  In order to get this bubble moving, we needed to get her up and moving - and since she barely wanted to be touched without feeling discomfort, it didn't look very promising to get her walking.  So Dr. Shindi decided to put her NG tube back in to help keep things moving in her belly.  This gave Addie so much relief.  A gas bubble after surgery is very common.  Since Addie seemed to be progressing so well, Dr. Shindi felt that pulling the NG tube when he did would be ok.  Addie was just telling us that she needed a bit more time and we needed to slow down.  And that was totally ok!!

Pittsburg hospital has a team of professionals that help the patients and their siblings understand what is happening (medically speaking) to them and why there is so many wires and lines hooked up to them.  They also bring crafts and other fun toys to the bedside to help keep the patient comfortable and distracted from everything that is happening around them.  Today, Addie made an Valentine ladybug and Alivia got to make a different craft which used different things found in a hospital and turned it into art.  It helps to make things seem less scary!

Alivia needed to step out of the room while Addie was having a test done.  This is how I found her

The big news today was that Addie moved from the PICU to the floor (7b).  We are hoping that things are much more relaxed and comfortable on the floor than in the PICU.  Another step in the right direction!!

Post Op, Day 1

February 5, 2015 - Addie is awake!  She is breathing on her own and she is awake!  Thank you God!  We got a good night sleep too, and were up and ready to go to see our brave warrior.  We had a quick breakfast at the hotel and headed back to the hospital.

Unfortunately, Addie was uncomfortable most of the day.  She is also terrified of the nurses.  We experienced this with other hospitalizations prior to this one.  She thinks anyone coming into the room is going to hurt her.  And in all honesty, they are.  But a 5 year old, hopped up on pain meds and just coming out of anesthesia can't understand they are only trying to help.  Dr. Shindi asked for her NG tube to be pulled in hopes that she would be more comfortable with it out and this would allow her to start drinking.  She was able to take a few sips of apple juice but she was very resistant.  In fact, Ben was the one giving her sips and encouraging her to drink and when he walked out of the room, she looked at me and said "don't let daddy give me anymore apple juice.  I DON'T want it!"  Haha, my first glimpse of our Addie's personality.  We were able to get her out of bed a few times to use the potty - but the pain was entirely too great and she screamed every time we moved her, so we decided to put her back in diapers until some of the pain subsided.  We were sure how Addie would feel about diapers since she is potty trained, but I think they were a welcomed relief knowing that she wouldn't have to get out of bed.

An ultra sound was ordered for first thing this morning.  We were able to see how that new liver was looking and how well the blood was flowing.  And everything looked beautiful.  Blood flow was excellent.  Her LFT's were still very high, but certainly trending in the right direction AST was 869 and ALT was 882.  Her ammonia was 31!!  Without any ammonia scavenger or arginine - her ammonia was normal!  What an amazing feeling.  We can finally have comfort in knowing that her brain is safe!  Thank you God!

Hours After Transplant

After a full 24 hours of waiting for Addie's Transplant to take place, we thought we were finally done waiting.   But we were wrong - we were still waiting.  Except this time, we were waiting for Addie to wake up.  We were waiting to see how Addie's new liver was going to work.  We were waiting for Addie to be able to breath on her own.  We were waiting for Addie to be able to talk to us, and walk, and fight with her sister.  We were starting to become expert waiters (or maybe someone is just trying to teach us patience).

In the operating room, Addie was given a 1/2 dose of thymo (a drug used to suppress and nearly stop her immune system from working so her body wouldn't instantly reject the new liver).  Unfortunately, Addie was running a fever and her blood pressure was low - both side effects from this drug- but we were anxious to see this side effect diminish.  One of the way's to watch how well her new liver is doing is by liver function tests (LFT's).  Addison's ALT is 1,837 and her AST is 3,382 (to put this into perspective - normal ALT is 14-54 and normal AST is 22-63).  It was expected for Addie's LFT's to be elevated immediately after transplant as her body adjusts to the new liver.  After all, she has a new liver that just a few hours prior was in the body of another child.  How in the world.......

Addie's doctor's and nurses were watching her closely.  We felt very content that they were taking very good care of her and were doing exactly what they needed to help her recover.  As for Ben and I, were were exhausted - feeling that we could finally take a deep breath, our bodies were ready for some rest (I think we were going on 36 hours).  We headed back to the hotel that my dad reserved for us for some rest with Dad, Linda, Ang, Katie, and Alivia.  Just before we left the hospital, Addie was extubated (her breathing tube was removed and she was breathing on her own)!!  YAY Addie.  A step in the right direction, sweet girl!!


Mommy and Daddy are so proud of you, Addison Grace!  We are thankful for such a fantastic team of doctor's.  We are thankful for the surgeon's, doctor's, nurse's, and all other "hands" that took such good care of you today!  We are thankful for God's protections, guidance, and unconditional love for our family throughout the day.  We are thankful that you are such a fighter.  You are truly our little warrior.

Some silly pictures of our "night at the hotel".  Thankful for family!!