Monday, December 22, 2014

Slideshow!!!

Megan worked long and hard on this slide show that does an amazing job of capturing what we've been through as a family and how you have all been such a blessing in our lives. Megan did her best to compile photos of you all, but unfortunately wasn't able to round up everyone. (We can only Insta-Stalk so much) We are thinking of you and are very grateful for you even if your mugshot didn't make the cut. PLEASE BECOME AN ORGAN DONOR!!! Yesutah.org

Click on link below. Enjoy!




Monday, November 17, 2014

Room Service Please

Today I'm back in my Hospital Time Share for a little R & R - Restlessness and Racket - and an overnight stay to continue treatment for the rejection I've been going through for the last couple of months. In fact, I'm back in my original suite from pre and post-transplant - Room 1021! I spent about a month and a half in this room back in April and May and you know the place hasn't changed a bit! Home sweet home! I may sound sarcastic (and I am being sarcastic...slightly) but many positive life changes went down in this room. 
Lots of good memories here. Lots of tough memories as well, but I spent a lot of time looking out this room's window, as I'm doing now, and found a lot of peace amidst a lot of uncertainty and anxiety. 
So my stay here should be brief, and hopefully these treatments/infusions/not big deals side effects-wise will be effective and I can get back to life. A life that lately has seemed like that little fake rabbit they put on the rail at the Track, you know? And I'm that grey hound, the one that wins, of course, but constantly chasing that goal that seems just out of reach. Sorry to go deep on you there...I think I need some food. 
Anyway, speaking of life, our's has been pretty uneventful lately. But here's a quick recap. 
Miles and Bode sat in a big Digger's Scoop thing on a walk recently. 

We were all New York Yankees for Halloween in honor of Derek Jeter and his retirement - Farewell Captain. 
Miles and Megan had an amazing trip down to Newport with Grandma Diane and got some much-needed beach time in. Miles also got to see his cousins and still talks about his best friends naming all of his cousins by name. Then he asks if we're going to the hotel, meaning the hotel in Califonia (not THE Hotel California, hashtag Eagles) to which I always have to say No, just going home. Maybe we need a guy in our bathroom that hands out towels or a concierge by the front door so Miles' obsession with hotels can be somewhat appeased. 
Grandma Janice and Papa Vince were able to witness the talent of tomorrow in Miles' preschool class' Halloween program. Epic is the only way to describe it really. 
Above all, we have just been enjoying our time as a family. Watching shows, taking walks, playing trains and Legos, snacking and drinking Hot Chocolate (which Miles pronounces with a thick accent that I can't decide whether it's from New England, New York or Chicago: Hwat-Chwak-o-leht), family chases with Bode in the house, eating pasta or helping Megan build bookcases and bake muffins. We keep busy being happy, and life is treating us well. 
I'm just waiting to have a line placed down a vein in my neck so for now I'll just say, Laters. 



Monday, November 3, 2014

Prayer Works

There are so many people who have blessed our lives in so many different ways as we have been fighting my health problems, and it's definitely been a fight. The other night we were complimented by one of our neighbors while Trick-Or-Treating (or as Cosby put it, begging) with Miles - pictured below in his costume. This neighbor is retired but worked in the medical field with countless patients in our shoes or similar situations. He told us, "You've been through so much and been such a fighter." I thanked him and let him know I haven't done anything alone, to which he replied, "Well you epitomize what I always tried to teach my patients in recovery: If the fat lady shows up she better have her fists raised ready for a fight!" 
Lately I've thought a lot about how all of us have our battles. Mine is pretty much common knowledge and that has been such a blessing because you're able to rally support for your needs, and as has been our goal as a family, hopefully help someone else who may have a more private battle to fight.  But not everyone's struggles are so public, and it's important for us to mindful of that everyday.


I have loved the #RamptonStrong motto. It started as our cause and the Standard we used (and continue to use) to get over every hump and hiccup we've encountered, and have found that it also stands for more than that. As we have been able to overcome obstacles with the help of others, #RamptonStrong has kind of become that same Standard for others to fight and continue fighting personal, or maybe not so personal, trials. I talk about this not to boast of anything we've done, because as I said, alone we have done nothing, but more to say Thank You, and hopefully everyone knows they can also come to us for any help they may need...except heavy lifting. Not because I'm lazy (though I am that) but still recovering from that one crazy surgery I had. 
With all that, I want to talk about someone whom we still haven't even met, but has given us so much strength through so many difficulties. One of our nurses from the tenth floor at IMC (shout out T-10!) has a son. Her name is Ashley and her son is Aiden. Shortly before I received my transplant in May, Ashley had begun showing Aiden our blog and letting him know about our story. He read of our difficulties in getting a liver and how sick I had been while waiting for so long. 
You know, there's just something about kids that helps everything make sense. Maybe it's that innocence thing, or that their minds have yet to be cluttered with all of the nonsense in the world. Maybe it's because they entered the world being raised by a heart beat, so that's where they first go for answers to their questions. Whatever it is, Aiden is no exception, and follows his heart, and his is a super tender heart.  
While we struggled in the hospital, Aiden wondered what he could do to help us. The night I finally received word that I would get that new liver (and that it would be viable and actually be transplanted) Aiden did the greatest thing that his heart could tell him, and that was to turn to God. Something inside him spoke loud and clear to his heart, and that was to ask his Heavenly Father to bless our life and grant us this life saving organ. And as God would have it, the organ came that night.  
Now many of you, if not all of you within the sound of this blog's voice, have prayed for us and continue to do so. We have been sent videos and voicemails of young children praying for us by name, and it has brought tears of joy to our eyes and gratitude for a Heavenly Father that knows us and blesses us through prayer.  We are eternally grateful for this, and as each of you have assured me that you are praying for us, I know that it's true and I know that it works. 
Aiden's mom Ashley is an amazing soul. She has raised two wonderful boys (the other is named Rory) through several difficulties in her life. As far as religion goes, she has allowed Aiden to make his own decisions of whether or not he should go to church each Sunday or how often he should pray. She has allowed him to follow that heart of his and it's not only been a blessing for her, but now for us and will be for so many others who read about his selflessness and spirit. I talk about Aiden's upbringing to point out that prayer hasn't always a major part of his life, and yet despite that, he chose to follow the Lord's prompting and pray for us. 
Aiden, I'm talking to you when I say that
PRAYER WORKS. 

God hears us.  He wants to hear more from us, and He will bless us and answer us in the way He knows it will benefit us most.  Sometimes it takes a child's simple, innocent prayer to remind us of that.
I love prayer, any prayer, but don't we all get a little smile when a child is blessing our home for safety at night? I love it when Miles can finish an uninterrupted blessing on a meal without wanting to devour his plate before he's arrived at amen. And most of all, I love hearing a child put their own feelings aside and ask God that another's life be blessed and comforted during hard times. 
After the good news of my successful transplant, Megan wrote about our experiences through the surgery, ICU, recovery and so on. Aiden followed along with Ashley and then, as anybody who follows this blog knows, we just dropped off the face of the earth. In the meantime, Aiden has received updates from his mom as I have gone through various hospitalizations and recovery hiccups. Wanting to be of more help, Aiden kicked his game up a notch. He read about the fundraiser that was held for us last year, and the funds we've been able to raise to help cover our many medical bills. This inspired Aiden to start his own fundraiser for us. Aiden plays hockey, and he's a regular Alexander Ovechkin, he scores so many goals. So Aiden figured he'd get a collection going with family members and teammates' parents and anybody else who wants to contribute, and ask for a dollar donation for every goal he scores this season, and then he'd donate all the money to us for our medical bills! Then we'd be able to meet up as well so he could meet us and give us the money person! Not only has he been doing this, but he had his mom help him put #RAMPTONSTRONG on his hockey helmet so that people knew or could find out what his goal was. 
During one of my more recent trips to the hospital, Ashley gave me a letter from Aiden where he talked about his plan. I could feel his enthusiasm and the spirit from his words. At first I thought, what kid under the age of ten thinks of something like this? I know I never would have, and don't know that I would now despite all of the good that has been paid forward to us. Then I just started to cry as I read this letter over and over again, thinking of Aiden's selflessness and desire to do good. Then I couldn't help but feel overwhelmingly blessed for everything we have been given, not only through these last few difficult years, but for everything we have been given, both good and bad, that has shaped us and made us better in the end. And it all started with an innocent prayer. 
I'll reiterate that we have been blessed by so many and in so many ways. Aiden is not alone in blessing our lives, but I felt like his was a story that needed be told. It highlights for me the need the admonition of Christ:

 And said, Verily I say unto you, Except ye be converted, and become as little children, ye shall not enter into the kingdom of heaven.
 Whosoever therefore shall humble himself as this little child, the same is greatest in the kingdom of heaven.
     -Matthew 18:3-4

Life can get hectic and clutter things. Every now and then we need to stop and simply talk with our Father in Heaven. 
It works! We are a testament to that. 
Thanks Aiden.

Monday, October 20, 2014

Super Snappy Quick Update (Photos Later)

 I feel terrible!  As if posting on a blog wasn't difficult enough for me to do, dabbling in other forms of social media that are quick and slick hasn't helped.  I know I have a few people (shout out to T-10!) a little perturbed that I haven't posted in what seems like decades.  Megan's posts during my second transplant process - first update: I did get my second liver transplant back in mid-May of this year - were beautiful, informative, and just brilliantly done really.  They were written in the form of letters, more like sonnets really.  I could go on but just go back and read them if you haven't yet!  Time well-spent, I promise.  I love that girl so much it makes me so happy to know how perfect she is for me.  Anyway, I'll do a Megan post later.
I did try to post about my transplant experience a couple of times soon after being released from the hospital, but this transplant was much different from my first, and really toyed with my emotions.  I felt anxiety and fear like never before in my life.  I fought bouts of depression, another thing I'd never experienced for my self, but only seen others fight through it.  So as I sat down to write, each time I'd get as far as my ICU experience (which was probably the most traumatic part of the whole deal) before I started reliving the experience so vividly that I'd have to stop.  So now, five months later, I'll give this update, albeit super Reader's Digest version, but hopefully it helps.
As I said, and as you know from previous posts, I received my second liver transplant after a really tough year of dealing with end-stage liver failure and all that comes with that.  In April of 2013 it all started with some funky liver levels, some abdominal swelling, and some bad kidneys.  After about two months in the hospital, I was fixed up enough to go home and continue fighting my original liver disease, PSC, that had returned to take my first transplanted liver.  At home I grew weaker everyday and lived on popsicles and a feeding tube through a central IV line in my chest.  The bag that held all the goopy mixture of vitamins, minerals and proteins and I became fast friends, but not in the traditional "friendship" sense.  It liked me and I hated it...but I knew how necessary it was to have.  I just couldn't keep any food down, so that bag kept me alive.  Changing it everyday was just a drag though.
Once my liver finally decided to really call it quits, I was admitted to the hospital.  That was in April of this year.  I can't explain to you in words the peace that I felt in the hospital for the three weeks that would follow up until my transplant.  Each day I would go for walks and sit on blankets on my room's window sill, and just look out at the east mountains, thanking my Father in Heaven for all of my blessings, and to even be in the position I was in, waiting for another life saving organ.  I was grateful for whoever would be making the ultimate sacrifice so that I could live, because I knew that the liver was coming, and that I would live.  About four or five (others would recall better than I) times, opportunities for a new liver, raising hopes and optimism levels through the roof.  But they all passed us by for various incompatibility reasons.  The livers would be too large, too fatty, too ridden with other frailties.  But I was never bothered by these "missed" chances.  I knew that the Lord was preparing the best option he could for me, and it brought even more peace to my heart that Megan knew it each time too.  It was funny when I got the call for the liver that would actually work.  Each time a liver wouldn't work there seemed to be a lot of hype and heavy prep work to be done.  My room - good 'ol T1021 - would just get hoppn' with docs and nurses and aids and people I'd never seen before, all getting me ready for the surgery.  Then once the chaos would reach its peak, the news would come that the liver wouldn't work.  I could tell how dejected and horrible everyone felt, and it really showed their love for Megan and me.  I felt the need to console others more than I needed to be  consoled.  But then, the evening of May 12th around 8:00 PM, the nurses had just done their shift change, and I would have an awesome nurse that I remember having at times during my first liver transplant process.  So we started laughing with her and saying how we were gonna have a party that night and Megan had all these snacks and we were gonna watch a movie so if she ever needed a break from her shift she could come chill!  It had and has become a standard ritual we have with many of the aids and nurses on T10 (shout out T-10!).  So after making all of our party arrangements, Megan and I were just kind of hanging out and talking.  Megan left the room for a minute, and my nurse came back in with some surprising news she thought I'd already heard.  She was going over the evening plan and just happened to mention, "and it looks like we're getting you ready for surgery, and..." right in mid-sentence!
"Wait, what?" I asked.
"Did no one tell you?"
"That's a pretty messed up joke," I said jokingly.
"No, no joke!  We have orders to prep you for surgery.  I can't believe no one told you! I feel terrible this is coming from me!"
I laughed and said, "Nah, no worries!  It just sounded made up because usually I'm signing forms and  everything, going through the standard drills, you know?  But that's great, let's do it!"  I still had a hint of skepticism to be honest.  So many prank calls make you hesitant to pick up the phone again, I know from experience making the prank calls, we could only get through maybe twice.  Anyway, the prep started and I just kept getting further and further along in the process that I felt well this is finally it.  I couldn't believe how long we'd waited and how much we'd been through, while still being mindful that many others in my hospital slippers had gone through much worse.  But the transplant was finally coming, and the surgery started I think around 2:00 AM-ish.  Didn't check my watch before going under on the operating table.
Now you can refer to Megan's letters to me to know what went on during the surgery and how complex it was.  I nearly lost my life, but will forever be indebted to my doctors and my Heavenly Father for all the miracles that came together to bring me out of that OR breathing and alive.  Something along the lines of 12 hours of surgery, a cardio thoracic surgeon who happened to be next door when my surgeon Dr. Alonso and Dr. Fujita at her side needed a chest cracked open, seven full-body blood transfusions, and tears of prayer from Dr. Alonso begging me to stay alive to be Miles' daddy.  I'm a pretty atypical patient, but all of my nurses and doctors, both from the clinical and the surgical side, aren't typical clinicians of people.  I felt and feel so incredibly loved and well-cared for by this group.  Some have become fast friends of ours, people we love and admire and actually hung out with!  I think it helps that I have Megan on my team because, she's kinda the Jordan to my Pippen.  She instantly catches your eye and you're in love with her from the beginning, and I just try to keep up and still sneak on the Dream Team's bench.  Bottom line, we feel so loved and try to reciprocate that love and so far it's worked out.  It's taught me a lot about how far that attitude goes in life.
Wow this post is not the "Super Snappy Quick Update" I promised.  Sorry.  I press on, read along if you choose.
Let's just say I woke up from surgery feeling pretty messed up.  The ICU was super tough on me, and recovery in the hospital was just tough.  In the ICU their main goal is to get the patient up and moving so that physical and mental functionality can set it its natural course.  I know how important getting up and moving is to recovery, but I couldn't believe how much I felt all of the trauma I'd gone through while I was out during surgery.  They want to get you up and moving, and it seems like they will beat that desire into you.  I know it seemed worse than it really was, but I developed a few enemies down there, so there went all that "you get the good you give" stuff I guess.  I just couldn't get moving since I was in so much pain and had gone through so much.  I literally felt like I was in a MASH unit while I was there.  Finally on my last day in the ICU, I had kind of come around.  It took me having to do lunges and squats while vomiting profusely and my naked hind parts hanging out for all to see in order to prove that I could leave the ICU.  When push comes to shove I'll do what I have to, I just didn't feel like it.  Getting up and staying up to do this took a tiny little note placed on the other side of the room.  It was from Miles and simply said, "I (Heart Sign) Dad."  I fought the tears and the vomit until they said I was good and that I could go back up to T-10 to continue my recovery. I was so relieved!   I was able to back up to my exact room that our amazing nurse Tsering had set up for us.  I was so glad to be past the ICU, but recovery still proved to be super taxing, now emotionally.
I think that my first transplant was a blessing and curse.  Looking back it seems that it was so easy!  I was sick for a couple of weeks, transplanted, out of the ICU in under a day, and out of the hospital in a week.  I was playing golf and biking and back to normal activity within a month.  This go-around, I had all the difficulties listed above and then some.  But from a recovery standpoint, I still had it in my head that it was going to be a cakewalk.  "As soon as I get that liver, I'm going to be doing all those things I did before, that I see other people in worse shape than I was," I would think constantly.  I didn't, however, anticipate the tough surgery, or the fact that having been so sick for so long, recovery would be such a beast.  I started to get down on myself, that I wasn't doing enough or working hard enough, and every day in the hospital was a sign of weakness that I just couldn't accept for myself.  It took a lot of encouragement from Megan and all of the people who had helped me so much pre-transplant to get out of the funk and get my head focused in the right direction, the right direction being to basically accept the reality of all that I'd been through and to push forward despite my unrealistic expectations.  I remember going for a walk down on the hospital's main level and finding a chair to sit in when I broke down into my first ever panic/anxiety attack.  I called Megan and asked her to come find me since I was so dizzy that I couldn't find my way away form this spot I'd sat in 50 times before.  Then by some sort of miracle the head social worker of the transplant team walked by and stopped to ask how I was doing since I was visibly shook.  I was talking to her when Megan arrived, we set some goals for productivity, and that was that.  It still wasn't super easy after that but her counsel and ideas, along with Megan's counsel helped so much and it was such a blessing that she just happened to be walking by.
I think I was only in the hospital recovering for a few more days than I'd been for my first transplant, but they were tough.  They were also such a blessing though.  I was able to learn and connect with Megan, whom I'd been married to for nearly nine years, in ways I'd never been able to before.  I was able to see and feel emotions that so many people struggle with on a daily basis, and grow from it.  Easy for me to say now that I'm home!  But in all seriousness, I value these experiences, and realize that the hardships we go through in life are never insurmountable, and there is always, ALWAYS someone who can help us through one trial or another.
Once I got home life went on, but now I was eating!  I was eating anything too.  I'd fallen in love with the hospital's Chicken Pot Pies, so when I got home and looked at what food we had, I saw a frozen Pot Pie and just cooked it up.  I have no idea how long it had been in there, but I ate it, and it was so good!  Megan got back from the store with stuff I'd requested and man...you should try going without any oral food for over a year and then just being able to start eating.  CRAZINESS!  Actually don't try that that.  Just take my word for it, it's awesome.  Recovery continued slowly, and I still had a few struggles with keeping perspective.  Since they had to perform a Sternotomy to complete the transplant safely, my chest was (and still is) really pretty tender, so much of my physical activity is still very limited.  But life became as normal as it could.  I was able to make the second half of our biannual Beach Trip to North Carolina, which is such a blessing in and of itself that my Grandma Bonne (Bon Bon to me) and Grandpa Ted provide for the Simmons family.  I had completely taken that trip out of the equation of my future plans but my two main dudes, first Surgical PA Benjamin and secondly Dr. Frech - who may or may not become Miles' Godfather - both gave me the clearance to go for the second week of the two-week trip, noting that emotional healing is just as, and at times more, important than physical healing, to which I couldn't agree more.  But the Beach was a blast and a blessing like it always is, and truly helped my healing process along.  As my strength built we went on hikes as a family, beautiful canyon drives...basically anything to get out and rejuvenate and live.
With liver transplants, you typically are heavily medicated for about three months with a high dose of immune suppresant drugs to help your body fight rejection of the new, foreign liver.  After those three months, you come off of those drugs, thus helping your immune system to not be so compromised and weak, and you are able to come out of the three-month, post transplant, "quarantine" phase.  During quarantine, you have to be super cautious of contact with others who are sick or scenarios where you could pick up an infection of some sort.  That's why I used a whole bag of wet naps sanitizing my airplane seat going to the Beach, and why that trip was a big "if" in the first place.  My time period to come off of those drugs was near the middle to end of August sometime.  After that, Miles would start Pre-School, Megan would start working more, and I would finally go back to work after being away for almost a year and a half.  My work, Bonneville Mortgage now Bonneville Real Estate Capital, and co-workers are some of the best people and friends someone could ever ask for.  In times when many people were struggling to find work, Bonneville sacrificed and double-timed it a lot for me and have gone to great lengths to keep me on staff.  They have been such a blessing to our family, and in August I was excited and getting ready to go back to work.
Before life went "back to normal" so to speak, we decided to take a quick trip down to San Diego to get some sun and beach in, and to see Megan's older brother Ryan, his wife Caroline and their kids.  They were so incredibly accommodating and really showed us an amazing time.  Even with the less-than-stellar news that would come mid way through the vacation, they showed us so much love.  It was just super fun!  Yeah I said less-than-stellar news.  Before we left, I had still ben getting my routine blood tests done.  I go to the lab at the hospital three days a week to have all of my liver levels and other tests done to make sure my new liver friend is behaving itself.  The Monday before we left, the liver started to misbehave a little bit.  Levels began to elevate slightly, and it started to concern my docs a little.  I explained we had planned this trip and wondered if it would still be ok to go.  I told them that it would totally fine if I didn't go, health is more important, all that, but they said I'd be ok to go, but to just get labs checked on Wednesday morning, which was the day we were planning to leave.  So that's what I did, and we left.  We knew something was up with my health, but didn't think anything of it until Friday around noon when I got a call from one of the transplant coordinators.  She wasn't my coordinator (every patient is assigned a coordinator who keeps everything in order and all communication goes through the coordinator - mine is Sue and she is a literal angel on earth - so amazing!) because my coordinator was out of town at the time, and since it was someone filling in she didn't know I was gone either.  We were planning on returning from our trip the following Wednesday, and the woman on the other end of the line started talking pretty quickly, which I wasn't ready for.  Megs had gone with Ryan to grab some sandwiches while I waited in the car with Miles.  The coordinator started saying how my lever levels were really elevated and she was asking me if I knew that or if I knew how high they were.  I didn't know how high they were, just that they were kinda creeping up before we left on the trip.  She then started saying how I needed to go in for a liver biopsy on Tuesday and have all sorts of labs done.  I let her know that I wouldn't be back in town until the following Wednesday and that I could do it probably Thursday.  She seemed a little put out by this news, almost angry, which I thought was surprising since it was my health we were talking about.  I got dizzier with each exchange in the conversation, and she said they get me scheduled for a biopsy once I was back and to get some blood labs drawn while in California which I agreed to, no big deal.  Anyway, my head was spinning.  I had left the car with Miles to get some air and walk midway through the phone conversation, so I took him back after hanging up and found my way to to driver seat.  Once Megan got back to the car, we started to head to the nearby beach we had planned to go to, and I told Megan about the call.  Needless to say it put a little damper on our vacation.  Thoughts of what it could be just flooded our minds, primarily we worried that the disease was back, which would obviously necessitate another transplant and who knows what else.  Having gone through what we just did, and coming out of it, it was a little hard to enjoy the beach that day.  Good talks with Megan and with Ryan and Caroline eased the tensions in my mind, and Megan's as well though I can't fully speak for her.  We knew there was nothing we could do, and that projecting problems that weren't there yet did no good.  I started feeling sick and couldn't eat very well.  Megan's mom Diane offered to fly me home early but I just couldn't miss this time with family, nor could I leave Megan to drive Miles home alone, even though she basically did when I laid down in the back of the car when we left and didn't spell her from the driver's seat until Nephi!  The news may have put a damper on the trip, as well as me getting sick, but it was still such a blessing and so needed.
I had the biopsy done Thursday morning early, and before we even had the biopsy results, my blood test got me admitted to the hospital Friday morning.  I was in for two weeks.  Our worst fears of the disease returning were dispelled by the news that I was experiencing moderate rejection.  Not good news my any means but, treatable.  And so the treatments began.  We first tried a steroid called Solumedrol, which worked pretty well, but then my numbers wouldn't continue to drop past a certain point.  Then we tried treatments of Thymoglobulin, which also worked to an extent.  I went home for a week with these results to see how they would continue to work at home.  When things didn't keep improving, and I got really weak and sick again at home, I was readmitted for a week to try a treatment Plasma Faresis where they take the plasma out of my blood, spin out the waste, and replace the clean plasma back into the blood stream.  After a week of this I felt pretty good and we decided to wait and see what happened.  Different treatment, kind of the same story.  Levels dropped only so far then leveled off.  Now I am at home feeling pretty good, and each week I go in for an infusion treatment of a drug called Solaris.
The good news is that I have tolerated all of the treatments well.  Things seem to be going in the right direction.  The bad news is if and when the rejection is cured, we may not know for sure which of these treatments was the real nail in the coffin, but I agree with my Docs' methodology that we gotta go fast and hard to get rid of it, then sort it out later.  Another not-so-great piece of information is that once we started these treatments, I went back on many immune suppressive meds.  Not only am I on the original offenders that you take post-transplant, but on a whole grip of others, plus additional meds to help control symptoms from those drugs.  I think every day I take at least 45 pills.  So that's a kick in the teeth.  But taking the is easy, but because of them I'm back in the "quarantine" phase, to the max this time since my white blood count is dangerously low.
It's somewhat discouraging, but we are pushing forward, always with the mentality that we are not defined by my illness, and that in the whole scheme of things, this is just a brief little struggle, and it will pass.  We are forever grateful to all those who pray for us and support us in so many countless ways.  You have all helped us to see these trials through a different lens, and we can only hope that we can sometime, either in this life or the hereafter repay you somehow for giving us life and happiness where it can be somewhat difficult to find at times.
Megan has been preparing an amazing slideshow that includes many of you, but most importantly shows how beautiful the lessons and blessing we have gained from our experiences.  She will finish it up and post it soon.  That's what the radio and television people call a tease.  I got a sneak peak, verdict is in, it's awesome and you will cry.  A good cry.
Much love.

Tuesday, May 20, 2014

Out of the ICU

ICU Day 4:

Dear Alec, you are on your road to healing.  Today, you busted out of the ICU and are moving up in the world.  Literally, you will be moving up 5 elevator floors out of intensive care and back to great care. I wasn't there today at the ICU with you because I was afraid I had gotten sick.  It killed me to not be there with you as told me the night before that you wee having strange dreams, anxiety and emotional distress.  I am thankful that my dad was able to take my place there and give you comfort.  I received a text from him later that day telling me that you were moving out of the ICU.  "Just moved him. Going to leave.  He is very tired.  Doc said that he came off oxygen faster than any patient he has ever had from a transplant.  Said he is doing great.  Liver is doing great.  Said Alec is very very strong and a real fighter.  Said you should not worry about your cold.  Washing hands is most important but he said Alec has enough white bloods cells he can fight a cold. You should rest anyway today."

I called you Alec to find out what room they were taking you to but you didn't know.  So, I called up to our floor and Cathy answered the phone. "Hi, Cathy, this is Megan Rampton and I am just calling to find out where Alec's room is.  Is it on the Eastside? (That's the best view)"  Cathy: "Not only is it on the Eastside, but we saved his old room for him and we rolled your cot back in there too."  (I love that it is known as "my" cot now.  Because its really the P.A.'s Christy.) These people here are incredible.  Sooo much love is found here.  Thanks T-10! 

Alec took a "selfie" He's still hopped up on weird pain meds as you can see from his eyes, but look at that beautiful color!



 (we are trying to get this kid of his binky, but he just woke up from his nap, so don't judge. Yes, he's almost 3)


Love you Alec!



Friday, May 16, 2014

ICU day 3

Here's Alec's stellar and totally hip and awesome surgeon Doctor Alonso



Today is numero Tres in the I.C.U for you.  Each hour and day you have improved.  There may have been a little 2 steps forward, 3 steps back going on, but that is to be expected when one recovers from such a nasty surgery.

I.C.U First Day through Day 2: You had a ginormous breathing tube down your throat and you did NOT like it. But honestly, who would?! It was exciting in the fact that each time a doc/surgeon came by to check up on you they were very pleased with the numbers that your new liver was providing.  They saw that you were on the lowest form of oxygen which is always a good sign.  Your billrubin has risen just slightly from 10 to 12.5 but that was one of the things they discussed with us by using a liver with fat, especially when it is put on ice before your transplant.  The picture I imagined was my favorite Thanksgiving dish that Aunt Lois makes, candy yams. That slow-cooked sugary goodness not only looks amazing, but tastes amazing too (Thanks Aunt Lois . .   The next day, well. . .that's another story. I mean it still tastes amazing, but it doesn't exactly look like its healthy for you. Upon opening the refrigerator and reaching for your next yam fix, all you can see is an inch of buttery fat at the top. For a moment I think, "Woah, this looks like a heart-attack waiting to happen." And then, "Ah well."  So imagine the liver might look pretty similar once cold. (Welcome to the random thoughts inside my mind)

Anyhow, you stayed  very still that day.  Your incision, especially the chest hurt quite terribly.  They did a good job keeping you comfortable but it still hurt.  Do you realize that between your two incisions its as though you had open heart surgery and a liver transplant?  Because that's how they cut to do an open heart surgery. Craaaazy.  Still, you never complained.  I told your nurse Sharon, "Thanks for taking care of him." She said sarcastically,  "Because he's so unpleasant and difficult."

Meanwhile, back at the house, Miles was his charming little 2 (almost 3) year old self. Except he was so charming when we went to the pet store.  He found some birds and decided to "ROAR" at them. He loved watching them run away from him each time he roared.

 (just after a ROAR. You can see them fleeing from him:)

Today you stood up with the help of your nurse. I can't believe they get you up and at em' so quickly when you are so beat up.  It makes me rethink complaining that I'm to tired and lazy to get up to find the T.V. remote Miles has hidden.

    
Day 3, TODAY:

Today started off really crappy! It made me so sad to see you in such pain.  That stupid breathing tube was the culprit.  Each time you shifted just a tiny bit you would gag on that thing and once you did you couldn't stop.  I have the worst gag reflex (well, not as bad as my brother Brandon) So once you started puking I was no help as I mimicked the sound and had to bust out of your room.  (I realize others read this blog so I am sorry for the descriptive imagery but I got to document it for my man).

It was hard to leave you this afternoon in the condition you were in.  But luckily, you had your tube removed by the time I came back.  Hallelujah! My dad came to our house just as Miles and I had woken up from our 2 and a half hour nap (yes, please!)


I was happy he was here to talk to you and hear about how happy and emotional your little experience was.  He told me that the physical therapist came in to see if you could stand up.  You were so stinking exhausted from your crappy day, and had such a difficult time breathing (even though you have what's called a "breathing tube" in your mouth) you just could not, would not be able to do it.  Then he told me that you saw in the corner of your eye a little card Miles had written in.  You saw the words, "I LOVE DAD" and it willed you to get  up and do physical therapy.  The coolest part about it all was the fact that that little note was what got your breathing tube out in the end.  Apparently, all that fluid that had remained in your body was the reason your tube had to stay in.  IT would be too dangerous to not have it.  But, by standing up, you were able to release all of that junk out of your mouth and in then end remove the tube! HOORAY! FIST PUMP!



 And this is you tonight. Day 3, with a sweet little smile on your face. You are a hero man! We love you! I'll see you tomorrow! XOXOXOoxxxooOxoOx Big hug, Big Kees, Little Hug, Big Kees.




Wednesday, May 14, 2014

Alec got a Liver Transplant!!!!

ALEC GOT A LIVER TRANSPLANT YESTERDAY!!!

Rampton disclaimer: Per Alec's permission we are sharing some of our post-op pictures with you. You may have to look away, but this is just proof of a miracle:)

May 13th, 2014 is one of our new favorite dates.  I can’t even begin to describe the relief we have right now.  I am going to write this email to Alec to let him know just how amazing he did despite all of the craziness.

Dear Alec,
            YOU ARE A CHAMP! The things you have had to endure over these past years are mind blowing.  You have done it with such courage, faith, strength, happiness, and love.  I am so proud of you, and I am so happy that you chose me to be by your side through all of this.   I just wanted to let you know what you went through this past night and all the grief and “excitement” ahem, fear you put into our lives while you were on the Surgery table. The doctors absolutely love you and have come to know you and our little family over the years.  They have learned that you are a cool dude, you don’t complain, and that you have an understanding and grateful attitude for them and the hard, beautiful work that they do.  All this time, so many of us have loved being by your side to serve you as you are so easy to love and help because of your kind heart.  You weren’t a difficult patient. Ever . . .Until yesterday starting at 9:45 a.m. when they began the no turning back liver transplant surgery until 10:30 p.m. when they closed you up.

I would like to document the events that transpired yesterday so that we may be able to reflect and draw on the strength and faith that we had in order to have this great ending. 


Around 7 p.m. on Monday, May the 12th we learned that we had a possible organ coming your way.  You were in your hospital bed as the nurses came to do rounds and pass along the information to the next nurse that would be taking care of you that evening.  Our nurse, Stephanie, had told you she was excited that you were going to get a liver that night.  That was the first you had heard about it and it almost sounded like a joke to you (a mean joke if it ever was one, but it wasn’t thank goodness.) Just then I enter your room and the nurses say, “That’s so great! We are so happy for you!” I look at Alec like, “what are they talking about?” He looks at me like, “I don’t know, I am hearing this too right now.” And so it began.  They started all of the pre-op stuff (i.e. blood transfusions, plasma, fluids, EKG chest x-ray, etc.) that we have come to know a little too well as you have been pre-opt many times with out seeing the operation part. I am happy to say that you made it to the operating room this time and successfully came out with a new organ.
 
Saturday night, you told me that you prayed soooooo hard for Heavenly Father to grant you an organ.  Sunday came and your Meld went from 37 to 40.  The highest we have ever seen it go and a sure sign that good fortune would come promptly.  You said you felt peace ever since that prayer.  I am so happy you did because it was what ultimately calmed your heart and prepped you for what was a pretty intense surgery.  All this time, we have really been close to the spirit.  We lean on each other and the Lord for guidance and reassurance.  From the beginning, you told me, “I’m not going anywhere.”  Anytime I ever felt scared, or spent a little too much time imagining the future and the “what ifs” I would remind myself or those 4 words, “I’m not going anywhere.” It’s funny how we give and take when the other one needs strength.  When you were unsure of things you looked to me.  I would assure you that I felt peace, and that you would be fine.  I loved the fact that you carried the peace with you and for us the day of your transplant.




We anxiously waited from 7 p.m. that night until 5:00 a.m. that morning (now May the 13th) with little sleep due to the constant prepping and also the nerves.  At 5:30 we said a prayer together on your bedside.  You said it.  You blessed the doctors with a calmed nerve, and that you would be safe. You said that you were grateful for our family. You were grateful for the person donating their organ and blessed his/her family. You were so happy that your prayers, my prayers and all of the prayers said on your behalf were being answered in this very moment. After that I helped wheel you down to the O.R. lobby.  A sweet little moment was when the guy wheeling you down said, Hi, I’m Miles, and I will be taking you down to the O.R.”  We both smiled knowing that at least we had a Miles there with us.  It may not have been “our” lil’ Miles, but a Miles would do. There we said our goodbyes. Lots of Love you’s, be strong, think about our family, and it’s happening!


 
I went upstairs to take a snooze as we had a couple hours before you actually would go into surgery. Best 2 hours of sleep ever! I was jostled by an O.R. nurse telling me that there was an important decision to be made downstairs. She told me that she thought Alec can’t make that alone, so she said, “I’ll go get his wife.”  The decision was this: Whether to wait for another organ offer as this organ was a little fatty (30-35%) or accept it.  (We found out later that his first transplant was the same and it had been awesome! It worked strongly and it was just that his PSC disease re-occurred.  There is still a chance of that happening again after this transplant but most likely we have good odd that it won’t). Possible complications could be a slower kick-start after transplant among some other things. I think this was probably the reason I never felt total confidence and peace in this offer.  We knew for awhile about our surgery but didn’t want to involve anyone but our parents and immediate family members. Not because we didn’t love them, but because this is some serious heavy emotional stuff.  We didn’t want to retract a statement saying, “we are going into surgery, and oh wait . . .it didn’t happen.  False alarm.  (Been there, done that, not doing it again!) The only way I can describe what I have been feeling (and maybe this is how you feel also Alec) is this.  I don’t know if you have ever been to a little kids “splash” park. There are all of these little water features the kids can run through, squirt guns to shoot and puddles to jump in.  Well, there is a particular water feature they have where the water is continually dripping into a bucket 8 feet off the ground.  Once it is filled to the top the weight tips the bucket one way or the other and water dumps down on the kids below.  I feel like that kid waiting for the water to tip and dump all over me. Except I wasn’t excited to get wet . . .at all.  If the bucket tipped it wasn’t going to be a good thing.   This week really would have tipped me over the wrong way. So, that’s why we had to wait until we knew for sure this surgery was going to happen. And so it all began . . . . .

Surgery:
Surgery took from 9:45a.m. until-10: 30 p.m. (what is that 13hours and 15 min?)  The surgeon was Dr. Alonso, the best surgeon ever.  She was attentive, sharp, smart, and like one of the docs told us, “she’s like a Jack Russell, in that she is feisty and she will never give up.”  I am so happy that this was the case.  She was our blessing yesterday.  She was the girl to do the job and we are so grateful for her and her team. We have established such great friendships with all of these people that have taken care of you and our family over the past years, especially the past 3 1/2 weeks we’ve stayed in the hospital.  It’s not a doctor/patient relationship; it’s a doctor/Alec, Megan and Miles relationship. We give hugs (lots of them) not handshakes.  It is so rare and I know the outcome could have been different with out Dr. Alonso and her team. After coming out of surgery, she told us it could have gone either way.  “That was the most difficult surgery to date. He just kept bleeding, and bleeding, and bleeding, and bleeding and bleeding! I am just happy we are here.” I told her “thank you for saving Miles’ daddy’s life.”  She said she actually thought of Miles and it motivated her to make sure Alec would come out alive.  I’ve heard that a lot from all those who participated.  They love you Alec.  We all do.  You connect to all those who get to meet you.  How special are you?! We all need you in our life.  You make us better, happier, stronger, wiser, funnier, faithful-er (yes, I know that’s not a word but I was in a rhythm.)


Dr. Alonso called me (and your/my awesome fam while we were waiting) in the first portion of the surgery and the phone call scared the crap out of me and the rest of us. She said it was very difficult to get through all of your scarring and adhesions safely (later we learned that your old liver was ginormous and sort of attached itself to the aorta…um, scary much?) She told me she wasn’t going to approach it the regular way. She was smart and saw that is wasn’t safe.   She would be going in blind and would most likely make a fatal mistake. She is awesome.  She said the alternative was to open up your chest and open up your ribs so they could get a better view. So, enters into the picture a Thoracic Doc/Surgeon. My brother Ryan made me feel more peaceful about it when he made this statement. “Looks like the free-way is backed up and they have to take the frontage road.” So that they did. We waited a long time after that phone call with not much news, just the fact that it was really busy in there.  I know it was a difficult time for them, but it was also a difficult time for us not knowing if you were going to make it out alive.  I was told I looked tired and that I should take a nap.  Whaaaaaa? There was no way, but I lay down anyway and listened to a Chopin station on Pandora.  DID NOT HELP AT ALL. All it did was it left me alone in my thoughts (and probably the same scary thoughts your parents and everyone else had).  “Is he going to make it? Is he going to be strong enough and live? What will I do with out you? What will Miles do with out you?!” So, I played Plants VS. Zombies 2 (way better than the first one) on the ipad as a distraction.
 
The best phone call of my life (of all of ours) was the call that said they safely got your old diseased liver out.  I’m just guessing here but it seems they might have spent 7 hours alone just trying to get that puppy out.  After that, we were able to breath, and I am hoping they felt better too. We will never really know just what went on in that operating room and all of the things they witnessed, but it’s safe to say I am glad I wasn’t in there to see it. It seemed the surgery progressed at a good pace and they safely finished at 10:30 p.m. Dr. Alonso pretty much busted down the doors in the waiting room looking for a familiar face.  I don’t think she has ever seen your dad in casual clothes, only a suit, (Me neither, hehe. Such a classy man that man) and walked right pass him. Your sister Micah recognized your doc and said, "are you looking for the Rampton family?" I had pushed a couch up to the wall making it like a little cave so I could try and get some sleep.  I hear commotion through my headphones and Dr. Alonzo practically scared the crap out of me but we embraced in a HUGE hug!!!! The relief in that girls eye were undeniable! We were so happy to see her and hear her tell us of your insanely difficult surgery and that you made it out alive. She said your surgery was the most difficult surgery to date. She said it could have gone either way in the operating room and that she was thrilled she was standing here with the news she had. We are happy you are here with us today and that she and everyone else there helped. We saw you later in the ICU and you looked beautiful!!!! I was so pleased to see how much better you looked from even the day before.  Your coloring had already improved in a matter of 30 mins after having a new liver in your body.  Your bilirubin dropped from 45 to 10 pretty much right after they transplanted you.  Your liver already started working, making good clots, and doing what it is normally supposed to do. Don’t quote me on these numbers b/c/I may be off a tiny bit but the Anesthesiologist (Dr. Aiden) told me today that your surgery is the toughest surgery he has had to do also. During surgery he used 135 units of blood on you. They were worried their blood bank for you would run out and so they recycled your own blood being suctioned from your body. His job was to make sure with all the blood you were losing that you had enough in there to keep you alive. He told me that at any given time a man of your stature has a round 6 liters of blood in your body.  The average liver transplant might get anywhere from 1-2 transfusions if that.  Alec you got 7 whole body transfusions!!!!!  Because of it, your potassium skyrocketed. But, once they put you on continuous dialysis things started to get into rhythm.  The word on the street and in the hospital that day was that the O.R. room was a bloody mess.



 
We never know the ins and out of what goes on behind the scenes, and the beautiful people involved, but a Doc did tell me that if he could count how many people were in that room helping you that is was around 40!  This makes me want to cry in joy for all of these hands that safely deliver you from danger.   To these known and unknown angels thank you! Thank you from the top of our hearts (why do people say bottom? I never understood that phrase) Thank you for keeping our family together.  Thanks for keeping my man alive. I have heard from so many of you your genuine concern for Alec, not patient in room 1020.  

So here’s to every position here in the hospital. Cafeteria, phlebotomy, nurses, aides, pharmacist, cleaning lady, social work, nutritionist, P.A.s (Ben you are a stud and have been with us since transplant #1, and Jesse we haven't forgotten about you) Docs, surgeons, coordinators, O.R. peeps, EVERYBODY!!!!!!! THANK YOU! We love you! This has been a long, long, long, journey but thanks for being a part of it with us.  You kept us happy through it all.

To all of our friends, family, and those we haven’t even met, THANK YOU.  We have heard some of your beautiful and tender moments that you have experienced. We hear of prayer lists in the Temples in England, New York, Washington D.C. Chile, and others.  We hear of beautiful meditations, and thoughts in nature.  Even my sister-in-laws dog was wearing a RamptonStrong bracelet on his paw (Thanks Cano). We have received phone calls, texts, emails, hand written cards, food, lawn mowing, brownies, hugs, fasts, treats on our doorstep, etc. you name it, you did it . . . AND IT HELPED US GET THROUGH!

We have just been embraced in a big hug this last crazy year (and always) by all of you and we can’t wait to return the love.
Also, we want you to know that the money we raised last year for Alec’s fundraiser is a big relief for us.   The insurance year started what a month and a half ago? And we have already reached out of pocket max (it ain’t cheap!!! thanks to our 3 and a half weeks here in the hospital and a transplant).  But if it wasn’t for you, especially you Bonneville Mortgage Company! Our stomachs would be in our throats right now or however you say that phrase.  Well, we would just be stressed out of our minds.  Our savings would have already been gone now, so thank you. We will be using that money now for all of this crap. Ha-ha!

Moving forward:
Alec will have a long difficult recovery.  He already is doing amazing just in one-day post transplant. They will probably take his breathing tub out tomorrow as he is already breathing well on his own.  Because he has a giant tube down his throat it has been hard to communicate.  I gave him a pen and a piece of paper and the words he wrote to me were, “I Love You.” Sheeeesh, sure know how to make a girl feel loved.  It sure is reciprocated. Also, you know he is feeling better because using the pen and paper later tonight he wrote, “Had a dream Miles putting honey in Megan’s hair.”  Oh Alec! We love you! Alec is now in quarantine for the next 3 months.  Which sadly means no visitors.  It’s too dangerous. So help me protect him please. We would love to hear from you via email: meganrampton@gmail.com And please don't be offended if we don't respond individually because of well, the circumstances. But we love you! Please know that! We will make it up to you! We have been so phone sensitive waiting for doctors calls and updates that we jump out of a dead sleep to answer them.  This week I will be sleeping a lot trying to recover from the autopilot my body has been on for the past year. So if you don’t mind holding off the phone calls, or text messages for the next week that would be great. I can’t hear a buzz on my phone and not go into an emergency fight or flight mode.  So, definitely email. We want to hear from you.  We want to share this with you. We have needed you this far and we still do.  So thank you for your kindness and respect.  If there is anything more to add, we will update our blog with that information.  Alecandmeganrampton.blogspot.com   I will post this email over there right now and add photos of our process.

Love to you all and mostly love to Alec’s organ donor.  Because of you he is Alive. EVERYONE BE AN ORGAN DONOR!!!!!!!!!!!!!!!! IF YOU ALREADY ARE, SPREAD THE WORD!!!!!!!!!!!!!!!!