Ready or Not.....

As many of you have probably already heard, things have taken a pretty drastic turn with my health in less than a week's time.  For my own purposes, I want to start from the beginning.....

When I was originally listed in February, my MELD score was a 22.  I was told at this time I fell somewhere around #20 on the list of patients I am "competing" with for a liver.  That's pretty far down, so I was told I likely had several months before anything happened.  In the meantime, I continued to have my blood drawn regularly to keep my MELD score up to date.  My doctors and I watched in amazement as my MELD score actually DROPPED for several weeks, going as low as a 19.  The lower your MELD score, the lower your "rank" on the transplant list.  So, I figured I had even more time than originally expected.  I began feeling GREAT physically, with plenty of extra energy which was a huge blessing!  However, just recently (within the last two weeks or so), I have been having horrible pain in the area of my liver.  It's very intense and usually comes on randomly, several times throughout the day.  It's a sharp, stabbing sensation between my shoulder blades and sometimes extends forward into my chest.  I know it's my liver that's hurting because I've felt it in times past and they've given me immediate relief with an ERCP procedure.  So, I recognize this pain and can call it for what it is.  Anyway, I've still been feeling really good, just having that pain off and on.  My MELD score went up last Friday to a 23, which was the highest it had ever been.  I was concerned, but that's still a fairly average score for someone in liver failure.  However, just this week I started having some unexplained internal bleeding and that became of great concern to me so I called my doctors and I met with them yesterday (Thursday) at Vanderbilt.  They were concerned as well, and wanted to do an emergency scope on me but I was alone and wouldn't be able to drive myself home after the anesthesia wore off.  So, they told me to come back today for the scopes.  As a precaution, they did some lab work to check my blood count and make sure I wasn't losing too much blood.  At the same time they just kind of randomly decided to check my liver panels again, even though I'd had them done less than a week prior.  The blood count came back a little low, but nothing too abnormal for me.  They sent me home with instructions to return the very next day for the scopes.

As I was driving back to Jackson, I got a phone call from my liver doctor's nurse saying that my liver panels came back significantly elevated and that in less than a week's time my MELD had jumped from a 23 to a 28!!!  As if that wasn't shocking enough, she then went on to say that this now bumped me up to candidate #2 on the transplant list!!!!  I didn't even know what to say.  My mouth dropped and I just kept saying "are you sure??"  She said they were absolutely sure and that I needed to begin preparing for "the call" at any time.  I hung up and didn't know whether to be happy or sad or scared or thankful.  I was just so shocked at this sudden change and I was not prepared for this news.  

As soon as I got home I began packing bags for everyone.  I got Kyndall completely packed with enough clothes for up to a week, including everything she will need from pull-ups to hairbows to a toothbrush!  I tried to think of everything so that in the moments of chaos that we are sure to experience, I won't forget anything!  I also packed several bags for myself for the very same reasons.  Matthew even packed one as well.  They are all sitting in a line, just waiting to be picked up and carried away.  It's weird to look at them and know that at any moment, this will really be happening.  

I didn't sleep at ALL last night, constantly waking up thinking I heard my phone ringing.  I've been on edge all day long, my heart skipping a beat each time my phone goes off.  I even got a call from a Vanderbilt number today and I just KNEW it was "the" call!  But obviously it wasn't.  Not yet anyway.  Ever since I was listed I've been pretty good about keeping my phone nearby, but knowing that I had several months before things got serious, I would often walk to the other side of the house and completely forget about it or even leave it in my car while I ran inside to drop Kyndall off at pre-school.  NOT anymore!  That thing goes EVERYWHERE with me!  And, if it can't be in MY hands I make sure it's in SOMEONE'S hands who can watch it for me.  That is surely one phone call I cannot afford to miss!

Ok, so back to today.  Matthew took me to Vanderbilt this afternoon for my scopes and as always, there was nothing to it.  Y'all know I love being put to sleep so I welcomed the forced rest that I got during that hour and a half!  The doctor determined the source of the bleeding and it is directly related to my liver.  My liver has apparently stopped making the very important proteins necessary for blood to clot properly, which ultimately leads to "thin" blood and allows for increased bleeding risks.  It's basically just another sign that things are not good.  If I continue to lose blood, I will likely be admitted because it could turn life threatening if not controlled.  

Once I woke up from the anesthesia they released me and I was thankful for that.  I actually feared they may force me to stay but they didn't.  We left Vanderbilt around 5:00 and my first mission was FOOD!  I hadn't eaten since 9:00 Thursday morning and it was now Friday evening.  We stopped at Logan's where I indulged in lots of "no no's" and I must say they've never tasted better!  =)

Oh, I forgot to mention that for the first time ever, Kyndall had to tag along with us.  With such short notice for these procedures, we didn't have time to arrange child care so we just took her with us and she sat in the waiting area with Matthew.  We went armed with a bag full of snacks and her iPad and said our prayers that she would remain quietly entertained.  Matthew said she did really well, so we promised her a prize on the way home.  She requested a chocolate bunny, so after a quick stop at Wal-Mart we had one very happy girl and two very happy parents!  As she took her first bite she closed her eyes for dramatic effect and in the MOST serious voice she said "Mommy....I have to tell you sumptin....chocolate is my LIFE!"  Where does she get these things??  She keeps us laughing constantly!  

Here are a few pictures from our adventure today.....

I made sure to dress her extra cute so that in case she was being completely obnoxious in the waiting area of the hospital, at least the cuteness factor would be on her side!

Why does this always happen at the worst times?  Like 5 minutes before we have to get out of the car??  We had a two hour car ride for crying out loud!

Kyndall made this picture for me on her iPad while I was having my scopes

She thought it was hysterical that they made me ride in a "stroller" too and as we were being pushed through the halls together she asked the transporter if we could race!!  This girl...!

Kyndall got a chocolate bunny for being a good girl and I got a pina colada smoothie from the DQ!  (I really wanted a coke Icee but for some unknown reason Tennessee is severely deprived of Icee machines and we could NOT find one anywhere!  Ugh!)

Now we are back home and once again my mind is in a million places.  I feel like I have one hundred things to do and I'm just hoping I can get them all done before I get the call.  So many loose ends I want to tie up and things I really want to check off my to-do list.  They may seem petty to some, but my mind just cannot rest until I know that every aspect of my life is in order before this happens....or at least as many aspects as I can control.  I want my house to be as clean as possible and have things organized and ready, but I also want to spend every second possible with Kyndall since I will likely be away from her for several weeks once I have to leave.  I'm supposed to be at a conference at our church tonight and tomorrow morning but my conscience just wouldn't let me go spend such a big chunk of time away from my family while time is so precious.  I'm disappointed in the timing because I've been looking forward to this "me" time for MONTHS and expecting great things from the conference.  I even had a buddy who was going with me and I feel awful having to cancel on her.  But, my heart is telling me to stay close to home and soak up every moment possible.  

My mind is all over the place and I really can't even describe in written words what a strange tangle of emotions I'm feeling.  Excited and thankful that soon I will be on my way to a healthier and happier life and that the timing will hopefully allow for me to travel home in August when my sister has her first baby.  That alone makes me want to say "call me tonight!"  The feeling of knowing it will be (hopefully) over with in the next few months is a great relief and gives me something to look forward to.  It means my life can finally MOVE ON.  I will be able to travel, make long term plans, possibly even have more babies!  All of those things make me very happy when I think about this happening sooner rather than later.  But then.......then I imagine that moment when I get the call and I have to say goodbye to Kyndall and Matthew.  I think about waking up in pain with tubes and monitors and machines keeping me alive.  I think about the weeks and months of rest and healing and learning to function all over again. (Didn't I JUST go through that??)  I think about all of the things I will miss out on during this time of healing and being away from my family.  Possibly Easter.....even more possibly Kyndall's very first dance recital, which I have been looking forward to since before she was ever born!  When I think about missing that, I just cry.  Maybe it sounds silly but to me it's a big thing.  Then I think about more serious things.....like the fact that at any moment, something awful and terrible and painful is going to happen to a poor undeserving soul out there and they don't even know it yet.  Someone is going to DIE very soon and they don't even realize it.  Some family is going to experience unimaginable grief and they are completely oblivious to it right now, while I sit anxiously waiting for it to happen.  As much as I have on my mind, that remains at the forefront.  I find myself siting and wondering who it will be and what will happen to them.  Will it be a young college student traveling home for Spring Break or to the beach with their friends?  Will it be a mother who leaves her children motherless and her husband a widower?  Either way, it makes my heart so very sad.  So, to say I'm excited about being bumped up to #2 on the list is not exactly the right word.  Obviously, this is what we've been hoping for but now that it's actually here I kind of want to dig my heels in and put everything on hold.  I just never imagined it happening this fast and I'm most definitely not ready, in any sense of the word.

I do, however, think it's no accident that I will likely receive my gift of life during April which just happens to be National Donate Life month!  Organ and tissue donation is such a wonderful thing and truly is the ultimate gift.  To be honest, until I became sick and in need of an organ myself, I had never given it much thought.  I hope that my story inspires and encourages you to at least consider becoming an organ donor if you aren't already.  I love this quote that I saw on the National Organ and Tissue Donation website......

"Don't take your organs to Heaven.....Heaven knows we need them here!"

While I have time, I'm going to dump a bunch of totally random pictures from my camera into this post.  If I don't do it now, it may not get done!

Weekly Daddy/Kyndall breakfast date last Saturday morning

"Frozen" has taken over our home and our lives in every way possible.  Now, even more so since I had the bright idea to get her the sound tract!  Here she is during one of her many performances as Elsa singing "Let it Go".  Complete with the cape, of course.  She even refers to herself as Elsa now and when asked her name tonight at dinner she confidently replied to the waitress "my name is Elsa".  Oh mercy.

Hand motions require that the mic be put down, apparently

She's making snowflakes with her hands as she sings along.  Ya know,  just like Elsa!

We thought of Cousin Justin and Cousin Brian when she wore this to church last Sunday!  Thanks for all you do to keep us safe from the bad guys!

Last Monday Caroline came over for a play date while Glory had a much needed morning to herself.  Kyndall was actually still asleep when Caroline arrived and immediately upon Kyndall's awakening Caroline insisted that her hair needed to be brushed!  It does tend to look like rats have been sleeping in it by the time she wakes up each morning.  I was surprised, but Kyndall actually let Caroline brush ALL of the tangles out of it.  Caroline is going to make a GREAT big sister!!

Time to break out the many Easter outfits and see how many times we can wear them between now and April 20th!!

This one made me laugh!  Think she's over it yet??

Lastly, I want to share this picture of baby Kate with you.  Kate's mom Amanda went to high school with me in Tallahassee.  Baby Kate was born needing a liver transplant, and in just two short months of life, she has received TWO!  The first one didn't work out and they were left desperately grasping at the chance for another organ to come along....and it did!  I follow baby Kate's progress on Facebook and it amazes me to think of all this sweet child has already endured.  How can I possibly complain or be fearful of what's to come when I think about the fact that a mere newborn has already experienced it two times over?  It just amazes me to see her progress and the way she is improving with each passing day.  It's one thing to be ill yourself, but to see your child (much less your newborn!) go through something like this must be heart wrenching.  Not to mention, Kate is one of three children so Amanda and her husband are tag teaming and doing their very best to balance Kate's needs with the needs of her brother and sister who are back at home.  It's given me a whole new perspective on this experience, that's for sure!  If you aren't already following baby Kate, you can find her under Kate Cherrington Conway on FB.  Amanda is great about posting pictures several times a day, and sometimes even sweet little videos of Kate.  A few days ago she posted this picture and I just cannot get it out of my mind.  Kate will forever be reminded of the ultimate gift she was given by another newborn (two actually) who weren't so lucky.  Soon, Kate and I will have this same scar in common.....

Please, each time you think of me I beg of you to think of baby Kate and to say a prayer for her as well.  Her parents are precious, God fearing Christians who love the Lord and love their baby girl.  I just cannot imagine being in their shoes.

And now, we continue to wait.  I will post updates as long as I'm able and once I've had my surgery I hope to have my Mom or Matthew take over the blog for a while, so you can expect some updates and guest posts from them in my absence.

As always, I covet your prayers and I am blessed by your love and support!  I'm anxious to see how the Lord's plan unfolds over the coming days and weeks!  Ready or not......