My Journey to a Miracle--Part 2

The first 24 hours after surgery are a complete and total blur to me.  I remember bits and pieces and random moments but most of it has been told to me by my family.  Matthew never left my side for a single second and has an amazing memory so I have picked his brain and gathered the details I'm about to share.  

Normally, when the family sees a transplant patient for the first time they are still intubated and unconscious.  Apparently, I was such a "star patient" that they were able to remove the breathing tube before taking me up to the surgical ICU and therefore Matthew never had to see me this way.  I was, however, still asleep and hooked up to MANY monitors, IVs and medications.  I'm so thankful that Matthew never had to see me hooked up to a machine that was keeping me alive.  I just think that would have been too much.

Matthew was the first one to see me since our family had still not arrived at the hospital.  He said that as I began to wake up the first thing I did was open my eyes and begin to cry.  He asked me if I was in pain and I just kept repeating the words "I woke up.....I woke up...."  I remember none of this but it doesn't surprise me because as I drifted off to sleep prior to surgery I really wasn't completely sure that I would wake up.  To realize that I had made it through was an overwhelming feeling to me and I suppose my emotions took over.  He said I would drift off to sleep then wake up and cry again.  Each time saying "I'm alive.....I woke up".  

As much as I hate these next few pictures, I'm sharing them because they are so precious to me.  They are the first moments of my new life.  They are real and raw and full of emotion for me.  I can hardly look at them without sobbing.

Fist picture of me post-op and I'm crying

I was hooked to so many monitors and I had lines coming out of every inch of my body.  I had a central line in the right side of my neck (my jugular vein) which they put in during surgery.  It stayed in for several days post-op and I remember it being so uncomfortable.  It measured my central venous pressure and did several other things that were vital to my existence.  I also had an arterial line that was stitched into my right wrist which went straight to my heart and measured my blood pressure in real time and also measured my blood gas levels.  All of this plus two (maybe three??) IVs pumping me full of pain meds, a catheter, heart monitors, oxygen, and oh yeah.....THREE drains coming out of my belly!

Matthew says I would wake up and cry and talk crazy talk and then fall right back to sleep.  It took quite a while for all of the anesthesia to leave my body.

It wasn't much longer before my parents, sister and newborn nephew arrived at the hospital.  They had driven through the night to get there.  I don't remember seeing them for the first time, but it's documented here in pictures.  My Mom also says that I just kept telling her "I woke up" and sobbing.

Confused!

My sister Kelly

This is probably my favorite picture from my entire journey.  My selfless, precious saint of a husband tenderly caring for me by feeding me ice chips as I continued to cry and sleep....cry and sleep.

Maybe this is too graphic for some, but this was the color of my urine as my body filtered the toxins from my old liver out of my system.  Yikes!

Chatting with my fan club

......Annnnnnnddd she's sleeping again!

For some reason during surgery they moved my hospital band to my ankle.  I have no idea who took this picture but I guess they thought it was photo worthy!

After a little while I was awake enough to sit up in the bed and greet my nephew Wyatt.  I still don't recall any of this....

Then my in-laws arrived

I have the sweetest mother-in-law in the entire world!

First order of business once I was alert and awake was to get an ultrasound of the new liver.  I barely remember this but I recall it being painful.  I had only been out of surgery a few hours and they were pushing and pulling on my belly which was obviously quite sore!  I do remember the ultrasound tech "accidentally" saying something about the liver being a little bit bigger than she expected it to be.  This was the first information I had heard about it so it sparked my curiosity even more about my donor.  I vaguely remember looking to my right and seeing that black and white screen with a beautiful picture of my new gift.  To me, it looked like a bunch of nothing but I knew that what I was looking at was nothing less than a miracle.  I was watching healthy, clean blood flow through a thriving new liver inside of MY body.  Less than 24 hours prior it had been inside of someone else.  A stranger.  An ANGEL.

Residents supervised the ultrasound and my family watched

First smile!  Kind of!

That entire day remains lost in anesthesia land but from what I've been told I just rested for the remainder of the evening.  I was on a strict NPO diet (nothing by mouth) and was only allowed ice chips which was fine by me since I had absolutely no appetite at this point.  My surgeon and some of the residents made rounds to check on me and told me that beginning the next morning I would be expected to get up and out of bed and start walking.  They went ahead and took out my arterial line that was in my right wrist but left the central lines in my neck.  

My in-laws stayed for a while to make sure I was stable and then went on to Jackson to retrieve Kyndall from the Burlesons.  They remained in Jackson in order to keep things as normal as possible for Kyndall.  My parents, sister and Matthew all stayed in Nashville until my discharge.  Matthew and my Mom made arrangements for my short term apartment which I would live in once I was discharged.  They found one right across the street from the hospital called The Villages at Vanderbilt.  It's a very popular place so we were lucky to grab an apartment on such short notice!  This is where my family stayed the rest of the week.  Matthew, however, insisted on sleeping at the hospital with me.  He never left my side for a second except to hop over to the apartment to shower and downstairs to eat.  He was with me every minute and I can never fully repay him for this.  God knew what he was doing when he gave me Matthew.  He knew I would need him in a big way.

Just as they had promised, the next day the physical therapists showed up nice and early and demanded that I get out of bed and start walking.  This sounded like a monumental task, as I was in extreme pain in the area of my incision and I couldn't use my abdominal muscles at all.  Not to mention I was weak and fatigued.  But what they say goes so I really had no choice!  Up I went!

Ever the dental hygienist, the first thing I requested once I was up and about was to brush my teeth!  It made me feel like a new person!  I was very unsteady on my feet so the physical therapists stayed close by my side.

After I brushed my teeth they suggested I try to get out into the hallway and walk.  I walked about 4 rooms down before telling them I felt too weak and needed to turn around.  They praised me and told me what an accomplishment even that small task was. 

When I got back to my room I wanted to get back in my bed but they suggested I try sitting up in a chair for a while.  My staples in my incision felt so tight and only way I was comfortable was to be semi-reclined in my bed.  Sitting straight up was very painful and laying flat was IMPOSSIBLE!  It felt as though I was going to split wide open.  (I slept in a recliner for the first two months after my surgery for this very reason!)  I was frustrated but of course I cooperated and sat in the chair for a few minutes.

They were constantly on my case about using my spirometer to help with my breathing and lung capacity.  My body was so swollen and tight that it was difficult to take in a deep breath so it made this task pretty painful and frustrating and admittedly, I did not do it as much as I should have!

Another thing I was dying to do was wash my hair!  I think all ladies can understand what I mean when I say it doesn't matter how awful you feel, having clean hair just makes you feel so much better.  Showering was not an option due to all of my monitors and lines so they gave me this shampoo cap and I washed my hair while sitting in the chair.  Crazy!

Friends and family continued to encourage me and cheer me on with texts, calls and Facebook posts.  Here are a few of my favorites.....

Everyone knows how much I love my Coke Icees so one of my friends stole this picture of me and put the words on it.  It definitely made me laugh, which was something I hadn't done in several days.

Another friend sent me this picture, saying she was thinking of me as she walked into a gas station and saw THIS!  I have never seen so many Icee options in my life.  She definitely hit the Icee trifecta!  This, too made me smile.  Smiles and laughter were few and far between so these little nuggets of encouragement (silly as they may seem) were absolutely precious to me.

He didn't have to but he did.  Dr. Scanga is my liver doctor and though he had nothing to do with my actual surgery, he made a stop by my hospital room for a friendly visit and to tell me he was proud of me.  Until you have a chronic illness you will never truly appreciate and love your doctors and medical team the way that I do.  These men and women are the reason I am here today.  Seeing him and knowing he came by after hours and on his own time (and on his wedding anniversary, no less!) to see me brought about another much needed smile.

Forcing a smile

At night I would try to catch up on my e-mails and other social media.  However, I was still on a LOT of pain medicine through my IV and I would often fall asleep holding my laptop!

The next morning, Thursday September 18th, they told me I was well enough to step down to the transplant recovery floor and that I would be leaving the surgical ICU.  This was great news!  Within just a few minutes they told me the transplant floor was full and I would in fact still be moving rooms, but it would be to a room just down the hall still in the SICU.  

Saying goodbye to my original home

And hello to my new one, which just happened to be the "presidential suite" as we were told.  It was HUGE with beautiful views of Nashville and Vanderbilt.  I was also told that this was where celebrities and big wigs get to stay when they're on the SICU.  NICE!

One of the views from my new room.  If you look carefully you can see the apartment where I would be living once I was discharged from the hospital.  It's the red brick building with the arches just beyond the parking deck.  It was so convenient for my parents while they were there and they could easily come back and forth anytime they wanted.  It was within walking distance which was great!

 They continued to have me sit in the chair, walk, etc.  Each day I got a little stronger but I was still VERY weak and in a lot of pain most of the time.  They kept me comfortable with IV medications as well as pain pills every four hours.  I was allowed a clear liquid diet by this point but I don't think I ever actually took the tray when they brought it to me.  Yuck.

I wasn't allowed to receive flowers of any kind due to the strict germ precautions and my nearly non-existent immune system.  But, I WAS allowed to receive balloons!  My sweet friend Stephanie sent me this bouquet of balloons which made my whole room just look so much happier!

Taking another walk around the SICU.  It was exhausting just to take a few steps but the nurses encouraged me to push myself and each time I did I got a little stronger and felt a little better.  

Of course, my biggest cheerleader was right there with me

As I got stronger I also got to do a few "normal" things like hold my sweet nephew.  He will obviously never remember this moment but I sure will.

Wyatt turned 2 months old on this day!

At some point they FINALLY removed that awful central line from my neck.  It left me with a lovely reminder of its existence for many weeks.  It actually got MUCH worse before it got better.

This is another one of my favorite pictures.  It's a comparison picture that my sister took of my eyes a few months prior to transplant on the top and two days post transplant on the bottom.  I was AMAZED and so thankful to see the change!  Though at times I felt like I had made a mistake in having the surgery due to the physical pain and emotional ups and downs, this visible proof of the miracle that had taken place was enough to change my mind!  Incredible!

The day before I was discharged, the transplant pharmacist (loved her!) came into my room and spent several hours conducting class with me and my two primary care givers--Matthew and my Mom.  I was still pretty high on pain meds so they wanted two extra sets of ears to hear these VERY critical instructions regarding my medications.  (They would be keeping me and my new liver alive once I left the hospital!)  She provided us with everything we needed including charts to track my daily medications, which proved to be a lifesaver.  My medication doses were changing daily and it would be a full time job just to keep on top of what I was and wasn't supposed to have and at what time of day.  The transplant team also educated us on how to take all of my vital signs, check my blood sugar, administer insulin as well as wound care.  It was a lot to take in!  

I also learned that I am to avoid grapefruit, grapefruit juice and any possible traces of grapefruit for the rest of my life.  Even the slightest amount can throw off my anti rejection medications and toss me into a full blown rejection.  Did you know that Fresca and Sunny D have traces of grapefruit in them?  Yep....I didn't either!  I've never been a fan of any of these things but don't you know as soon as they say I can't have it.....I begin to have a mad craving for it!  

Here we are having "class" with my transplant pharmacist

The next day was Friday September 19th and my team made early morning rounds just as they usually did.  Dr. Gorden (my surgeon who I adore) walked in, put his hand on my knee and said "So.....are you ready to get out of here?"  Shocked and stunned, I didn't know what to say.  "Yes!" I quickly replied.  He explained that since I had continued to show great improvement and no complications I was still his "star patient" and he felt confident in discharging me to my apartment across the street.  He told me he had never let anyone go after only three days but that I had done so exceptionally well that he saw no other reason to keep me.  

I was THRILLED!  Little did I know, the best news was yet to come!  Then he said "So what's this I hear about a pony party?  I mean.....are there going to be REAL ponies there?"  I looked at him a little confused and then he told me that the nurses had dropped word to him that the next day was my daughter's 4th birthday and I was pretty bummed to be missing her big birthday bash that I had been planning for several months.  I explained that it was a My Little Pony party and that there would be no actual ponies there.  He then said "Ok well in that case do you want to go to this party?"  Thinking he was joking, I laughed it off.  Then he said "No I'm serious....do you want to go?"  Thinking he had forgotten I lived two hours away I reminded him that the party was in Jackson.  "I know this", he said,  "Do you want to go??"  I looked at the circle of residents around me and asked "is he joking with me?"  One of them replied "He's the boss and whatever he says goes!"  With tears in my eyes I thanked him (and maybe even hugged him) and told him how much this meant to me.  He gave me strict instructions that I was to go to the party but return that night.  I could not stay in Jackson but had to return to my apartment in Nashville.  I happily agreed and as soon as he walked out I called my parents to tell them BOTH sets of good news---Not only was I being discharged in a few hours, but I actually had permission to leave Nashville and be at Kyndall's party!  I was on cloud nine!  I decided not to tell anyone about my surprise appearance at the birthday party, but rather show up and just totally freak everyone out the next morning!  I have never been so excited!

(I'm not sure why this says Tuesday because September 19th was definitely a Friday)

Friday was also the first time since Monday at lunchtime that I was given anything to eat.  They told me if I could take a few bites of my breakfast and keep it down then I would be one step closer to busting out of there!

Once the discharge papers were submitted they began unhooking me from all of my life lines.  My wacky husband actually asked (jokingly) if he could remove my drains.  To my shock and horror, the resident said YES!  My husband who has absolutely zero medical experience was about to yank three tubes from the depths of my belly!  He gloved up and went to work, doing exactly what the resident told him.  Having those tubes come out was a very strange sensation.  It didn't really hurt but I could feel the pressure changes as they just kept coming and coming and coming!  I don't even know how all of that was inside of my belly!  Of course, the resident stitched me up once they were out---NOT Matthew!

Here's my (very swollen) belly showing the three drain sites as well as 33 of the most beautiful staples I've ever seen.  I have since named my scar "Grace".  I have always heard that grace is demonstrated when God gives you what you don't actually deserve.  I didn't deserve this precious gift of new life.  I didn't deserve a second chance.  Yet, it was given to me and I am ever thankful.  Each time I see and touch my stomach Grace will forever remind me of God's goodness and provision in my life and of his amazing GRACE.  This scar, ugly as it may be to some, is BEAUTIFUL to me.  It means everything. 

With a little help, I changed into my clothes (still sporting my PJ pants but semi-dressed!) and waited for transport to come and get me!  I was finally on my way to the next chapter and I was seeing the light at the end of the tunnel.

Saying goodbye to my fancy hospital room

I even got a sweet tea for the road!

Yep, that's me behind that sea of balloons! Ha!

Can we just talk about those lovely yellow hospital socks paired with my lime green flip flops?  I wasn't trying to impress anyone...I was just happy to be getting out of that place!

Waiting patiently for valet to bring the car.  I think this nurse might have been tired of getting her picture taken.  Just a guess! 

As we were driving across the street to my apartment I saw this sign on the corner.  Chills ran down my body and tears filled my eyes.  How could I see something like this and not think of my precious donor?  This would be the first of many emotional moments for me!

I was pleasantly surprised to see my apartment for the first time!  It was cozy and clean and much more comfortable than my hospital room had been.  It would just be me and Mom living there, with Matthew making weekend visits and a few here and there during the week.  Prior to my arrival, Matthew and my Mom had done some major grocery shopping and stocked the fridge and pantry with tons of healthy meal and snack options.  If you know me at all, you know that I am NOT a healthy eater.  I despise veggies and eat lots of processed carbs.  I live on sweet tea, Coke and milk.  I was thankful that they had listened to my dietitian and avoided excessive sodium, sugar and basically anything GOOD but I was secretly worried that I would starve to death!  I really didn't know how I was going to learn to eat this way but at this point I had no choice.  I was at the mercy of my rule following Mom and husband!

The first thing I did was make myself comfortable in the recliner.  I didn't know it at the time, but this would be my BED for the next month.  The first thing Mom did was start the process of sorting out my medications and getting an organized system in place.  We practically had a pharmacy laid out on the kitchen table for several weeks.

My gi-normous old lady pill box

My sister sent me a beautiful bouquet of flowers and along with the balloons from Stephanie, these really cheered up my apartment.

I think I spent the rest of that day just sleeping and I'm sure I took a long hot shower somewhere in there.  Matthew, my Dad, my sister and my in-laws were all back in Jackson preparing for the big 4th birthday party that was to happen the next day.  I really don't know what I would have done without their help!  I made as many of the last minute plans from my hospital bed as I could but there were a certain amount of things that required help that I could not give from two hours away.  Kyndall still had no idea I was going to show up and she had not seen me since the day I dropped her off at the Burlesons' on my way to Vanderbilt.  I almost couldn't sleep that night because I was so excited about seeing her reaction the next morning.  

You can read how it all went and even see a video of her reaction in a prior post I made HERE

My next post will be the hardest one yet.  It will document the real trial in this journey....My body's rejection of my new liver and the amazing race to save it....to save ME.