"Every good and perfect gift is from above..." James 1:17

Friday, June 26, 2015

#lovelifegiveliver: The Feelings

My liver is fine but my heart is changed

This post is dedicated to Elijah's mother, one of the bravest, strongest women I have ever met.

I've gone round and round trying to figure out how to make sense of all of my feelings and all that I've learned (and am still learning) during this process.  Bear with me and my ramblings.  I think it will be best to sort out these feelings and lessons in list format.

1.  Humbled:  I made the choice to do this.  I already knew that I'd be giving up a sizable chunk of my time.  But, in a moment's notice I had my mom, Tina, and Rebekah OFFER to give up a sizable chunk of their time to help me.  I didn't ask.  They offered.  Tina used precious vacation time and had to arrange childcare for her two kids, my mom left the business she owns, and Rebekah put in countless extra hours on top of what she already does here.  Not only did each of them put their own lives on hold but they also made extra meals and brought gifts on top of it  I know they love me and I know I'd do it for them just the same but that fact that they chose to without even stopping to think how it may affect them is such a selfless act.
Family, friends, friends of friends, and family of friends all sent meals, cards, gifts, gift cards, financial help, encouraging texts, flowers, etc.  People I don't even know sent me gifts.  I have been deeply touched by every single loving gesture.  Special thanks to my sister, my brother, and the Chiari/White clan for not only showering me with all sorts of extra love but for paying special attention to my kids and to Elijah as well.
My church, New River Community Church of God, has faithfully sent dinner every single night since my mom left and will continue to do so until I leave to go to PA for the summer.  Wow.  That's a big deal.  That's six weeks worth of dinners.  Every night.  For 9 people.  That blows me away.  Not only have they sent dinners, but they have sent healthy, delicious, nearly gourmet meals that have been different nearly every night.  I cannot get over their generosity, their love, and their support.  This has allowed me to focus on healing and on loving my children with the energy I have each day.  I'm thankful to be part of such a giving body of Christ.
I am humbled.  More so than I have ever been.  Ever.
2.  Angry:  Going into this I knew God was going to use this to teach me a lesson.  I mentioned that in my blog here.  What I didn't realize was the size or importance of the lesson He was going to teach me.  It brought out the ugly in me.  That makes me angry.  Who wants ugly in them?  I don't.  But I sure had it in there.  You see, I know that God designed me for the life I live.  He knew I would need to be strong, capable, competent, confident, organized, and motivated.  I did my best to thank Him and to acknowledge Him for blessing me with the qualities I would need to be a mother of six and the wife of  a Marine.  However, somewhere along the way I must have become too proud of and/or too reliant on those qualities.  Instead of thanking God daily for giving me the strength and the ability to do those things, I became seeing it as my own strength and ability.  Which it is not.  So, I truthfully believe this surgery was to strip me of my pride in my own abilities.  I can deal with the pain.  I can deal with the scar.
- I can't deal with not being in control of my life.  In the hospital I was at the mercy of Tina by day and of the call bell by night.  I couldn't use the bathroom without help, I couldn't shower without help, I couldn't even see to order from my menu, I couldn't get dressed...I actually needed someone else.  I was never before in that position.  That was a huge pill to swallow.  I'm so thankful it was Tina and then Jordan doing those things...people who understand me and my faults...people who love me no matter how ugly I can be.
- I can't deal with not being in control of my house.  I came home and my house was spotless.  Most items were in their proper place.  The laundry was clean.  The yard was picked up.  The linens were fresh, the pantry was stocked.  The house still stood and none of it was because of me.
- I can't deal with not being in control of my children.  My kids' homework was done.  No one missed soccer or dance.  Chores were still complete and tests were studied for and passed.  My children were loved by my mom and Rebekah.  I know that they missed me and longed for me to be home, but they didn't die and are no worse for the wear.  Rebekah did a tremendous job keeping them in their comfortable regular routine and my mom gave them extra Grammy love and Aunt Nannie showered them with extra goodies.
The ugly truth is that while I truly am grateful for all that my Mom, Tina, Rebekah, and Jordan did for me, the children, and the house during my absence and recovery, I hated to see that life could go on without me.  My own physical life could be taken care of by someone else.  My house and my children still survived without my master plans and spreadsheets.  Sure, things weren't quite the same, the dynamics were off, and the children started to get testy near the end, but life went on and I was left to lay and watch it.  I hated realizing that.  And I hated working through that.  I had some ugly moments while realizing that and I'm thankful for the love I received regardless.  I'm still sorting through the aftermath of this realization.  I'm still sorting through all God wants me to do with what He has shown me.
3.  Amazed:  Knowing that you are having major surgery gives you a new appreciation for life.  Living through it without any physical impairment gives you an even better appreciation.  Seeing pictures of your body cut open and one of your major organs being cut in half gives you a huge appreciation for life.  It really does.
Before I left for the hospital I left the children a note reminding them how much I love them, what I love about them, and how they make me strive to be a better woman, mother, and Christian every single day.  I tell them this often and they know it, but as I wrote the letter I realized that I need to be telling them this every day.  Every single day.  Multiple times a day.  I have taken too many moments for granted.  My children are far too precious to me than to assume they know that I love them.  I am amazed at how well they did with this whole procedure.  While they had a testy period, they have stepped up to the plate and taken on much more responsibility.  They have taken care of me, been understanding of my limitations, and have loved on me so much.
I am amazed at how well God orchestrated every even AND the timing of every event.  From the date of the surgery, to Tina finding Elijah's mother, to Jordan's schedule, to the kids' schedule.  Everything was perfect.  Absolutely perfect.  There is not one thing that I wish would have gone differently.

I have struggled posting this blog for a while.  Still as I review what I wrote, none of the words still seem appropriate to describe the events that took place, the feelings in my heart, and the stirrings in my soul.  To date, this has been the life even that has impacted me the most.  Would I do it again?  In a heartbeat.  Hands down.  Life is precious.  Every life is precious.

   

Sunday, June 7, 2015

#lovelifegiveliver: The Facts

#lovelifegiveliver

This post is written in honor (so much honor) of Hannah George and Elijah Tsawo

To say donating part of my liver was an experience is gross understatement.  It was a miracle.  Until this process even started, I had no idea that there was such a need...such a desperate need.  I want to tell my story, from beginning to present, in an effort to raise awareness for the need of living organ donors.  I want to show you that while there were many painful parts of the process, it is doable for the average person.  Highly doable.  In fact, I would do it again if I could.  The good far outweighed the bad by so much I can't even begin to compare it.  This post is intended to provide the facts about the surgery.  What happened and how it happened.  The next blog will explain the feelings of the process.  What I learned going through it.

The previous blog post (here: If Not Us Then Who?) detailed how I came to this place.  The only detail missing was that they called me on Tuesday afternoon to let me know that surgery would be that Friday morning.  As soon as I got the call, I made my calls and everything was set in the matter of hours.  I'm telling you, my support system is amazing (HUGE shout out to my Mom, Tina, and Rebekah).  After scrambling like a nut on Wednesday and Thursday, I left Thursday night after I tucked all my babies into bed and kissed them extra to meet my mom and Tina a hotel near the hospital.  We got zero sleep and left for the hospital at 5:00 am for a report time of 5:30 am.  Thankfully, Tina photo documented much of the journey so I'll let the pictures help tell the story.

*While all of the pictures are appropriate (no unnecessary body parts), some are just plain gross and a few are pretty graphic (viewing of internal organs).  Proceed with caution if you are the queasy sort.

Here is my no make-up, no lotion, no deodorant self with the Captain of Team Tina, Tina.  (I refused to abide by the "no hairspray rule") 

Me, Tina, and Mom a few minutes before they called me back to prep

After the called me back, I left Tina and Mom while the took my vitals and dressed me for surgery.  Tina and Mom were allowed back after the initial IV was in place and I was ready for anesthesia.


Almost ready to go back
I had an AMAZING anesthesia team.  No nausea post-op, just as promised :) 

Time to say So Long and head back to surgery.

Right after Mom and Tina left they pushed some medication through my IV to "calm me down."  Boy, I'd like a home stash of that stuff.  I was high as a kite with not a care in the world.  Upon entering the operating room I remember telling them all about my children.  The last thing I remember is being hoisted onto the hard metal table...I don't even remember landing on it.  They were that good.  I did pull a fast one on them, however.  What they didn't see was that I had a wallet-sized picture of the eight of us tucked in my hand.  When they realized it, they let me hold it all throughout the surgery.  I awoke with it in my hand.  The surgeon snapped some pretty awesome pictures during the surgery.  Two of them are when I am the most opened right after the cut and right after they separated my liver.  This to me is absolutely awesome.  Not only did he take the pictures, he showed them to Tina after the surgery was over and emailed them to me for a souvenir upon request.


Here is my liver and some other assorted guts.  Note the huge gloved hand in my guts under my liver.  Just plain awesome.

This picture was taken after my liver was cut "millimeter by millimeter."  The portion on the left is still inside of me.  The portion on the right is inside Baby Elijah.  Both of our livers have been growing since they minute they were attached back to all the various vessels.  (Side note:  after I saw these pictures, I realized why I felt like someone had beat me up...that is one heck of a hole!)
You can see the picture of my family here in my right hand.  Tina noticed it while I was in recovery. <3  This was a precious gift the surgeons gave to me.  Clearly, they respected the love I have for my family.
As I awakened more (still in a anesthesia-induced drunken stupor), Tina was right there by my side, snapping some pictures to help me remember what is at best, foggy and groggy in my mind.  She was also there to comfort me, reassure me, and advocate for me...and to boss me around when I just didn't feel like doing anything.  



Just starting to realize I'm alive
Cue Drunken-Stupor look now - I was feeling good and so happy to see my Tina.  I became much more ornery once I realized the NG tube and oxygen were shoved in my nose along with six IV's shoved in my arms.

Starting to realize it...

All the nastiness coming out of my stomach via NG tube
Thumbs Up:  Successful surgery, successful pain management


Praise God, the surgery went so well that I didn't even need to go to the ICU.  I was able to move from the recovery room straight to a step-down unit.  I don't remember much about the first 24 hours after surgery other than waking up for short bits of time.  I do remember waking up to a whole host of residents swooping down upon me (or so it felt) to remove my dressings.  I remember being scared and awestruck at the same time.


You can't see them yet, but those residents are starting to nose around my guts...
They found me...fresh meat! (note the picture still in my hand <3)
Swoop!  Here they come!  Thank heavens I still have boatloads of anesthesia in me and can't feel a blasted thing. 

All hands on deck...literally!

After finishing my coffee with that stupid NG tube in, I convinced them to pull it out...
(Note: I still have Brea's dog tucked beside me.  He really was comforting)
So here they are pulling it out.  The sensation was odd and the smell was terrible!
After that ordeal it was time for another nap so Tina went to visit sweet baby Elijah who was courageously working on his recovery...without the added benefit of Starbucks

He's clearly still groggy and in some pain but managed to give Tina a half smile
He even mustered enough strength to move his little hand around
Some baby sweetness


I realized that I absolutely HATE the air compression leg stockings.  They are hot, itchy, and so uncomfortable.  I begged to take those things off so they agreed as long as I would get up and take regular walks.  Here is my first awkward and slow attempt.
IV Pole, check.  O2 just in case, check.  Foley bag (YUCK), check.  Walker, check.
  
Here I go!  Despite the pain, it felt SO good to be out of that bed.

I made it back into a chair for the first time.



The precious gift the pediatric nurses made for me...Elijah's hand print.  It now is proudly displayed on my dresser.

The next morning I woke up, ready to face the day.  There was still PLENTY of anesthesia left in my system (little did we know the actual pain meds prescribed to me wouldn't work) and Tina brought me another Starbucks.  All I needed was make-up and I was ready to face another day.




I also needed (read: wanted desperately) a shower.  Only three things stood in my way:  the epidural, the foley, and the fact I couldn't stand very long or move very well.  In my mind this was an easy fix. Sweet talk the doctors to remove my epidural.  Then, the foley can come out.  Lastly, sweet talk Tina into scouting out a shower chair.

Epidural ready to come out.  The only thing I felt was the tape ripping every single hair off of my back.



And the foley came out.  On its on.  Halfway in the hallway, halfway sitting in this very chair.  Yuck.
Clearly, after that nastiness it was time for a shower.  Tina got me a shower chair and like a good sport (and a best friend) helped me with my first shower.  We weren't brave enough to wash my hair just yet but overall we did a great job and I felt a lot better.  It was also a wonderful feeling to be out of the hospital gown and into some real pajamas.  After this experience I have a different view and greater respect for the patients in the hospital.  Working in health care you have a tendency to become desensitized to helping people with their daily needs without taking a moment to think how they may feel about it.  It's downright odd to have someone help you shower when it's something you've been doing since you've been five or so.  While I've always been gentle and kind with my patients, I will without a doubt see them in a different light.  Here is my incision a after the shower.  It's looking better but hurts like the devil.


With my new cleanliness and loads of anesthesia still in me, I was ready to go see Baby Elijah and his mother for the first time.  He had taken a turn for the worse at this time and needed to be put back on the respirator. 

I truthfully don't have any words to describe this experience.

Again, I have no suitable words for this.

Emotionally and physically I was exhausted after this.  Time to say goodbye for today.
If I recall, I went to bed after this encounter, flooded with all sorts of emotions and thoughts.  Looking back, I still don't have any words precise enough to describe this encounter.

Day 4 I was ready to leave.  I was started to really experience pain as the anesthesia was wearing off and I was being transitioned to new medications that didn't work for me.  I talked the resident into removing my JP drain...warning:  this is a little gross :)



I also wanted to see Elijah again.  This time when we went up he was having an ultrasound done.  I was able to see MY liver in HIS body working in real time.  I could actually see his blood flowing through the arteries and veins.  That was amazing.


The red color is the blood flowing through the arteries, the blue is the blood flowing through the veins.  AMAZING

The next day my liver counts were too high and I was in pain.  They sent me to get an ultrasound of my liver while they decided what to do about my pain.  Thank goodness for Tina.  It was late at night and my team was not in house.  She demanded that someone, anyone, come who had power and authority to give me some medicine.  We both were ornery and on a mission.  After being the squeaky wheel for TWO HOURS, the trauma team was able to offer me a medication that actually worked.  That day my skin started to yellow a bit as did the whites of my eyes. 

You can see that I've "yellowed" just a tad.

The inside corners of my eyes started to yellow as well.

Though I'm still swollen at this point, the incision continued to heal well.

The next day my pain was under control and I was ready for a shower.  A real one.  One where I could wash my hair.  It was glorious.  Again, I felt so much better after that.  Shortly afterwards, another problem started.  The medicine they used to control my pain cause severe constipation and nausea.  Yuck.  We tried to remedy that all sorts of ways (I'll spare you those details).  The only thing that worked was to pull me off all heavy duty medications and start me on ibuprofen.  While the pain control wasn't as effective, it was enough to get by.  I'd rather be in a bit more pain than to be pain free with loads of nausea and relentless constipation.

Nothing feels as good as washing your hair after a few days :)

Tina and I wanted to see Elijah and his mom again.  We decided to take dinner up to them that night and enjoy some time with them.  Unfortunately by the time night came I was really under the weather.  We did make the trek to see that sweet baby and his mom but I wasn't good company.  I had enough energy to love the baby and eat about three bites of my dinner...the dinner poor Tina left the hospital to go get.  I had a craving for Chipotle the day before but by the time night came, it left me.  Tina- I owe you a good Chipotle dinner!


How can you not smile when you see his sweet baby face

#lovelifegiveliver

Elijah's mom and I
Enjoying Elijah
I was hoping to be discharged the next day (the day Jordan was due back home) but that didn't happen because of being ill the previous day.  I stayed in the hospital one more LONG day and was set to leave the next day, provided all my counts were back to where they should be.  I woke up that morning feeling better than I had before.  Being off the heavy duty meds for 24 hours did the trick.  Everything was moving as it should and I had an (odd) appetite back.  Believe it or not, I had milk and cereal for breakfast that morning.  For those of you who know me, I have not had milk since I was about 5 years old.  I can't stand it.  I don't eat cereal either.  Ever.  I attribute it to the lack of Vitamin D from being in a hospital room for 7 days.  Who knows.  Either way, I left that evening with Jordan to return back home.  To my home.  With my husband.  And my kids.  And my dogs.  Any Rebekah.  And it was good (well, except for the bumpy ride home).
I had to show Brea that her beloved dog made it through this ordeal :)

The first milk and cereal breakfast I had in roughly 27 years

Here are some sweet pictures Elijah's mom texted to Tina and I throughout our stay.  He is just precious.





We had a lot of things going on once I got home (end of school activities, recitals, etc) so I am BEYOND grateful that Rebekah stayed to run the house.  She kept my entire home together during my absence and recovery.  I left for this surgery without writing down one instruction or worrying one bit.  I have no idea why the Lord saw our family fit to bless us with her, but He did and I am grateful.  Rebekah, you are so much more than our nanny...you are our family <3

Days here at home are good.  I have good days and nights and some bad ones but overall I am pleased with my recovery.  Below are updated pictures of my healing

My incision is healing nicely and is nearly all the way closed except for the top and corners.

This is the hole where my drain was.  It's closing slowly but surely.  I cannot wait to wear pants again :)

The bruising from a bad IV is healing nicely too...thanks in part to my Boo-Boo Essential Oils

So you see, most anyone can do this.  It's doable.  Yes, it's uncomfortable and sometimes rather painful, but as I said before the good FAR outweighs the bad.  By far.  Every time I get another picture of Elijah for his mother, it makes every single uncomfortable moment worth it.

I cannot close this post without thanking my wonderfully kind, caring, and talented team at Duke.  They were beyond phenomenal and attentive.

Dr. Ravindra:  the surgeon for the abdominal transplant team
This has got to be one of the most gentle, loving doctors I have ever met.
Dr. Berg:  the director and hepatologist for the abdominal transplant team
Dr. Berg is a nationally known hepatologist who is full of information.  He thoroughly explained every question I had with patience and clarity.
Dr. Stonerock:  the transplant pyschologist
A wonderfully sensitive man, Dr. Stonerock was a tremendous support before the surgery and while I was in the hospital

Dr. Greene:  the anesthesiologist
Thanks to this man, I had absolutely NO nausea coming out of surgery.  He also provided comic relief the during the moments leading up to surgery