Happy 2-Year Anniversary!

Today marks Christopher’s 2-year transplant anniversary. I can’t believe it’s been 2 years (and it’ll probably won’t be the last time I say this) because like yesterday, our journey up until this point is still crystal clear in my mind.

Halloween has always been a bittersweet celebration for us. For Chris’ first two years of his life, he was thisclose to dressing up, trick-or-treating with his brothers, and eating their spoils in the end. But, he always managed to escape it. The first Halloween, we landed at 6Long because of an infection as a complication of his first Kasai surgery. The second Halloween, we were back on 6Long because he was transplanted the day before.

So, as much as I want to forget the epic transplant surgery and 5-week hospital stay thereafter – I can’t. It was a day there were no treats and costumes were the last thing on my mind. I was a mom of a just-transplanted 17-month-year-old baby.

Every Halloween, as Christopher and I walk hand-in-hand up and down the neighborhood collecting candy, I stop to revel in the moment.

I thank God for giving my Chris-Chris a fighting chance. I thank my friends and family for their prayers of love and support. I thank his doctors and nurses who’ve followed us. I thank God for giving me the the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

Something so ordinary as trick-or-treating brings tears to my eyes as my Chris-Chris gets another night to be like everyone else.

“…Transplant is a treatment…”

Today, I logged into my work computer and I came across this touching story, the story of a UCSF fellow donating one of his kidneys to his ailing wife, and it hit close to home.

For over a year, Christopher has been hospital-free.  Jason and I wake up each day, taking our own “medically necessary” vitals on Chris:  forehead – cool to the touch; eyes – happy; appetite – verocious; attitude – CHRISTOPHER.  Kiss on the forehead, high five, and celebrate another day without the thought of squeezing in a hospital visit.

Our closest interaction with anything medical-related has been Chris’ monthly blood draws and even those are normal, routine tasks.

He is the brave little kid waiting in the adult patient room.  The phlebotomist gives me the “look” as if I should have taken him upstairs to the pediatric phlebotomist who specializes with crying babies and figgity toddlers, but I assure her that Chris will be her best patient ever.  And as always, he is.  Without a flinch, he gets his blood drawn and we’re out the door in 2 minutes flat – one minute is him waiting for his graham cracker that he never eats but sometimes takes for twin brother, Evan.

Then today, I read this article and it yanks me off of my cloud 9: “…transplant is a treatment, not a cure.”  In this breath, I thank God for bringing us this far in Chris’ transplant journey but in the same sentence, I ask God to make it last forever.

Please don’t let Christopher relapse.  Please don’t let Christopher get poked and prodded at the hospital.  Please don’t let Christopher ever lose the will to fight.  Please don’t let ME ever lose my son.

I’m grateful for the path we’ve taken so far and the many people (doctors, nurses, family, and friends) who’ve taken care of us physically and emotionally.

But, the future is unknown and all I can do is live in the moments of now.

The Impossible has been made Possible

10 months of NG tube feeds, hundreds of cases of high caloric formula – the impossible became possible: Christopher has caught up and surpassed his twin!

Tonight at the twins’ well baby visit, Christopher has finally outweighted and outstretched his twin, Evan.  Christopher is officially 2 pounds heavier and 1 inch taller!

Happy 3rd Birthday, Christopher and Evan!

Mom, Dad, and Nate-Nate love you!

Our COTA fundraising website is going down…

Hello!

I’ve just moved about 40 pages of our COTA website back to WordPress.  After successfully fundraising over $40,000 for Chris’ liver transplant, our COTA website is unfortunately going down after 2 years.  I can’t believe it’s been two years since we started this journey!

As I was moving the pages, the pictures, the journal entries, etc., it was like going through the emotions, the good and the bad, all over again!  And because Chris is doing so well these days, I feel like I don’t know who was writing back then.

Again, thank you for supporting our cause and thanks for your thoughts and prayers.  Maybe now that I have more time, I can update this blog more often.

Love,

The Paduas

Down to 2!

After months of anticipation, Chris’ nurses finally gave us the go ahead to take Chris off of 3 of the 5 meds he was on!  He would not longer need Cellcept (chemo), Prevacid (stomach liner) and Sceptra (antifungal)!  He is now only down to 2 medications – Prograf (immunosuppressant), which he will take for the rest of his life, and baby Aspirin (somewhat blood thinner), which he will be on for about a year more.

We started tapering off the Cellcept about 5 months ago.  We knew when Cellcept went away, the other two meds would follow simultaneously.  However, this entailed blood draws every 2 weeks which Chris bravely endured.  It was nothing new to him and every 2 weeks, he would hop on the seat and sit there quietly and patiently.  Parents in the waiting room were amazed when they realized a toddler didn’t make a sound when getting blood drawn.  And every visit, he would expect his graham cracker which he never ate.  That cracked me up!

There were a couple of setbacks where we couldn’t taper the dosage for a week or two or when I got too busy with school to take him.  We waited patiently not getting our hopes up and there he was everytime being the good patient that he is.  My brave boy!

Wow!  Just a year ago, I was juggling about 15 medications daily which required a spreadsheet and pill box.  It seems like another lifetime ago.

Thank you for following Chris’ progress.  Hopefully, it’ll be great news from here on out.

Thank you for applying to UCSF’s MEPN Program but you were NOT one of our final candidates….

I was pretty disappointed when I got the thin letter in the mail.  It was from UCSF’s School of Nursing and I knew from the size that it was bad news.  Given this was just a dry run; a I’ll-apply-with-what-I-have-now-and-hope-they-like-me attitude.  I was initially going to apply for 2010 but I just tried my luck anyways.

6 revisions later, here is my final personal statement.  I cried as I wrote it remembering every detail of last year but at the same time, it was therapy for me.  ‘What doesn’t kill you only makes you stronger.’  Like what I said in my statement, things happen for a reason so I’m trying to find the silver lining in this cloud (as I always do).  86 slots for 700 applicants and I’m not one of them – I’m just going to have to try next year after I get some volunteer experience and maybe a GRE course under my belt.  Wish me luck!

After eight hours of restless waiting, I stood beside my son’s crib at UC San Francisco’s Pediatric Intensive Care Unit silently sobbing and asking God, “Why my baby?”  Christopher lay there weak and helpless—cords, intravenous lines, and a breathing tube coming out from all over his small body.  My little fighter had just endured a life-saving liver transplant and as tears rolled down my flustered cheeks, all I could think about were the months of anguish, pain and uncertainty that led me to that moment; but, I also thought about the blessings in disguise that helped us get through it.  In this defining point in my life, I decided that I was going to pursue the Pediatric Nurse Practitioner advanced nursing profession to help patients and their families who had similar hospital experiences to mine.

I have always been a firm believer of fate in that things happen for a reason.  Most people fall apart from adversity; but, for me, it is merely turning lemons into lemonade and making the most of everything.  In college, I was not the typical student.  Having a baby at 19, I was pumping breast milk in between classes, writing term papers late night with my 1-year-old son Nathaniel on my lap, and working two part-time jobs.  Being a student and a parent simultaneously was a challenge and many sacrifices were made; but, in my mind, I was committed and determined to finish college and accomplish my goals.

After receiving an American Studies degree from UC Santa Cruz, I jumped feet first into corporate America by learning all I could in a promising commercial escrow coordinator career.  I was happy and content in this role; but as a person who tutored and mentored high school students and substituted for special education classrooms in the past, I was not satisfying my innate desire to help people.

In the summer of 2006, I gave birth to my twin boys, Christopher and Evan.  Because the twins were born just shy of 36 weeks, they stayed in the Intensive Care Nursery at UC San Francisco.  It was difficult balancing 24/7 bedside vigils and home; but soon enough, we welcomed the boys home.  As if raising newborn twins was not challenging enough, my world shattered when Christopher was diagnosed with Biliary Atresia and immediately had his first Kasai procedure surgery at 3 months old.  Taking care of a newborn who had just undergone major surgery was emotionally painful and little did I know it was just the beginning.

I spent the next year building an alliance with Christopher’s liver doctor, Dr. Philip Rosenthal, and his medical staff as they deliberated Christopher’s need for a liver transplant.  I pushed away my emotions to be strong for my family and in the short amount of time; I took an unofficial crash course in nursing.  I learned medical dosages administering Christopher’s medications; I became well-versed with standard medical terminology from our many hospital stays on 6Long; I became highly skilled with NG tube placement because Christopher tugged at his tube; and I tended to Christopher’s PICT at home.

Christopher was transplanted on October 30, 2007 at the age of 17 months and my decision to become a nurse solidified.  With the typical hospital stay being three weeks post-transplant, Christopher and I were at UC San Francisco for an unnerving five weeks because of two staph infections, three subsequent surgeries, two liver biopsies, and one episode of slight organ rejection.  I fathomed that each moment could be our last good-bye, but I told myself that God did not give me what I could not handle.  Like a fly on a wall, I observed the various roles that the nurses played whether it was our bedside R.N. or the Nurse Practitioner following our recovery.  I soaked it all in: asking questions, demanding answers, and learning what I could from the nurses I had met.  I had found my calling, my passion, and my purpose.  God had answered me.

Having the opportunity to study advanced nursing at UC San Francisco would be the opportunity of a lifetime.  With a genuine love of education and learning; specializing in a specific field makes the advanced nursing preparation only natural.  In this role, I believe I can bring my own unique hospital experiences into the nursing profession and upon completion of the program, I would love to work within the UC San Francisco family as a Pediatric Nurse Practitioner.  I truly admire the compassion and dedication that Christopher’s nurses have shown and I want to be able to do the same for others.  I want to work directly with patients and their families offering my own expertise as well as understanding a very familiar experience.  I would have the advantage of being on both sides of the spectrum as a nurse and as a patient, in turn, helping to bridge each side.

My experience has been my darkest hour; but, I have turned Christopher’s transplant journey into a fruitful learning experience.  With each milestone Christopher reaches and with each day that I have him with me, I count my blessings knowing there has always been a bigger plan for us.  UC San Francisco has a lot to offer and I cannot think of a more fitting place to study since they have been a part of Christopher’s life since the day he was born.  I am grateful that my son is still here to smile back at me and I remember why I am pursuing a nursing career—for my brave boy, Christopher and other patients like him.

Looking Forward….

Today we had Christopher’s clinical appointment.  It has been 4 months since we’ve seen Susan’s bright face.  Since June, Christopher has gained 2 pounds!  He is quite the heffer which pleasantly pleased the nutritionist and Susan.  Instead of being 4 pounds lighter than Evan, his twin, Chris is now only a pound difference.

I have been taking Chris in for his biweekly lab draws.  Susan is weening Chris off of the Cellcept and we are almost there!  Once he’s off Cellcept, he comes off of two other medications.  Wow!  To think last year, we were trying to remember all 15 medications.  This is too surreal.

At the appointment, my burning question was what’s next?  Long term, we will eventually be scheduling clinic appointments every year.  We’re not there yet but soon enough – right now it’s at 4-6 months.  Unfortunately, Christopher will be on Prograf forever and 4-6 week blood draws.  I’m not too worried because Christopher has stopped crying when they draw blood.  Given his phlebotomist, Tina, can’t retire forever because I won’t let her (she is THE best), blood draws are a norm for Christopher now.  He is such a brave boy.

Susan warned me about what would initiate an admit to 6Long and I will try my best to keep him away from the infections that would deem it.  His immune system is weakened due to his meds so a live vaccine to something like chicken pox is a no-no.  Mama Hen has a lot to do in the coming years!

I left our appointment beaming.  Great visit, flawless blood draw….We can only look forward now.

Happy Anniversary Christopher!

October 30th marks the one year anniversary of Christopher’s transplant.  As I thumbed through my journal entries from last year, I couldn’t help but think that that was me writing.

I drove to Parnassus today for an unrelated reason and as I made my way up the hill, the hill I took every day for five weeks to be with my Christopher, a chill feeling went up my spine and I remembered every detail of our stay.  I remembered the call that sealed our fate.  I remembered waiting in the waiting room for 6 hours.  I remembered how our eyes met when Chris finally came to.  I remembered crying and I remembered despair and disappointment not being able to go home.  And I remember thinking December 1st was too good to be true when we all piled in the car not believing that we were actually going home.

Most of all, I remember my strong support network.  Our visitors.  Our nurses and doctors.  Our family and friends.  Strangers wishing us the best.

Before me today, Christopher is a lively, spitfire lil boy with so much passion, intelligence, and love.  He tells me when his remaining five meds are “nasty” and when he knows we’re going in for his blood draws: “Poke, Mom!”

As the scar above his belly button fades lighter and lighter, I count my blessings that he is one day less susceptible to complications of the transplant and I remember it all.

This Halloween is bittersweet.  It will be Christopher’s 1st Halloween ever.  For his first two years, we celebrated on 6Long but this year, 2008, he gets to trick-o-treat with his brothers.  Come rain or sleet, we’re going!

Thank you all for following us so closely with our journey.  We really couldn’t have done it without you.  Christopher is too young to understand it now but he has a family in each of you and we are forever grateful.

My New Journey

I’m so jealous! When people are posting their beaming smiles at graduation this season, here I am registering for classes at City College.

Don’t get me wrong – I finished with a great yet useless degree in American Studies from UC Santa Cruz over 4 years ago. I thought I’d be changing the world one social issue at a time. Too bad, so sad. No one hires non-experienced grads and it’s nearly impossible to get into non-profits unless you know someone. “What do you do with a degree in American Studies?” is what one curious interviewer asked. Dumbfounded, I just stared at her blankly.

Even before Chris went to the hospital, I was trying to leave my lucrative career as Commercial Escrow Assistant. I worked my butt off, paid my dues, and was enjoying the spoils. But then I grew a conscience. Who am I really helping here?

Then when Chris underwent his surgery and I called the 4 walls of Chris’ hospital room home, I got a closer look at what nurses did. Yeah, I’ve been to UCSF plenty of times before that but maybe it was the temporary insanity I was experiencing that shed new light on this very well-known profession (my grandma was a nurse and 3 of my aunties as well). I had experience with Chris’ PICT line, his NG tube, his Broviac line, saw his innards without wincing – how much harder could it get?

And the icing on the cake that solidified my fate was when I tried to go back to work. The real estate market tanked and there was no money to bring me back. First time ever did we have layoffs in our small office. It went from an office of 20 to a little more than half. They let go of the HR manager! You know that’s bad!

Anyways, here I am on unpaid, parental leave (FMLA ran out inconveniently). I’m stuck in a limbo in which they’re dying for me to come back but then again, can’t afford to bring me back just yet. How do you ask to be laid off?

With mounting bills of 3 kids, one being sick, I’m temping – back at square one but this time with some experience. It’s not a total “screw you.”

Ohh, how it stings though. This isn’t the best job market, just in case you forgot.

So, here I am. I need to get the science and math pre-requisites out of the way before I can even apply to grad school. Anatomy? Yuck! Chemistry? Scoff! Math? Gag! I always boasted that I finished college without ever having to take Math and it bites me on the butt tenfold. Go figure.

What can I say? I’m a sucker for school.

Wish me luck! I’m going to have to dust my brain off…it’s been awhile.

P.S. I wouldn’t have though about becoming a nurse if it wasn’t for Christopher’s journey. I can’t believe I’m going back to school! Things definitely happen for a reason.

P.P.S. Christopher is doing great!

They’re BAAAAAAACK!!

Where you ask? We’re back at UCSF!

I don’t say it with excitement; as a matter of fact, I mean it with much disdain. We almost made it to the 6-month post-transplant anniversary without a hospital stay but low and behold, Christopher has managed to keep us on our toes once again and we’re here.

Yet, this time around Jason and I were a lot less worried because it innocently started with symptoms of the stomach flu, in particular diarrhea and vomiting. Last Saturday, while we were vacationing in Reno, Christopher started to vomit. It wasn’t his usual I’m-sick-of-the-meds vomit; it was everything he ate or drank came right back up. At first we thought he ate something bad so we wearily backtracked on the past couple of days. It became so bad (as in 10-15 episodes of vomiting and diarrhea) that we reluctantly took him to urgent care at the local hospital fully aware that to re-hydrate, they’d have to stick him with IV meds.

When we got there, we went over his long, nauseating (no pun intended) medical history and waited for the doctor. To our surprise, the doctor’s advice was to give him a nausea medication, give him Pedialyte, and call it a day. It was the best feeling ever! Expecting the worse and getting the least – Christopher would be spared the IV.

And what a wonder drug it was! Chris transformed instantaneously like he was invincible. We returned back to the hotel.

To our dismay, Evan apparently showered my dad in his latest feeding. He caught what Chris had! At that moment, I knew it was going to be a sleepless night. Taking care of sick twins with vomit and diarrhea – now this I had to see.

And an experience it was! That night I basically slept on whatever part of the bed was semi-dry. I felt really bad for housecleaning as we went through towels like they were table bets. The bed and bedding was a whole other game!

We somewhat survived to the next day but knew the car ride home (which ends up with Evan throwing up anyways) was another experience in itself. Four hours of uncertainty didn’t sit well in my stomach.

The first hour I spent giving each twin several of teaspoons of water slowly so that it wouldn’t upset their stomachs. The next half hour involved cleaning up Chris – no biggie. The other half hour was cleaning up Evan – ehh, thank goodness for the hijacked towels we took. 1 for 1. Evan won the prize by vomiting twice in the car. The next two hours was listening to them cry, whine, gag, etc. It was, by far, the worse car ride ever!

Home at last!

I loaded the one of six laundry loads, tended to Nate and the twins, prepared some soup, and put the twins down for bed.

Grumble, grumble, grumble. “OMG! I know I didn’t get what they had! That’d be too cruel!”

First down was my sister Jamie. Next down was me. Jason soon followed. Dad was next and Mom was last. Nate, miraculously didn’t get it!

And what a feeling it was. I only vomited twice and it was horrible! I couldn’t imagine what Christopher was going through but man, he’s one strong kid because I sure couldn’t do!

Another sleepless night, Jason and I took turned running for the toilet, giving fluids to the twins, wiping up their mess, and getting a wink of shut-eye. In an urge of selfishness, I was tempted to call the ambulance for myself but realized no one would be there for me and I wouldn’t be here for my kids. I’d have to tough it out and Christopher was my inspiration.

Jason and I and the rest of the family got better; everyone except Christopher. In fact, he seemed to get worse being lethargic, inability to walk, and still vomiting and stooling. I assumed he wasn’t well yet because his immunity is lowered from the transplant medications. By Wednesday night, Jason and I resolved that if Christopher wasn’t better by Thursday, we’d make the call to UCSF.

Fast forward to today and here we are. Christopher was still throwing up on Saturday with no end in sight. His energy level picked up a little thanks to the IV drip that ran since Thursday afternoon. We asked for the wonder drug again and it’s done its job so far.

According to the doctors, Christopher is suffering from C. Dif. infection (google it). It’s highly contagious and nothing to take lightly. They started the antibiotic regimen on Sunday and Christopher is still stooling a lot. We’ll see what happens over the next couple of days.

Not sure how long we’ll be cooped up here again but it’s a bad sign when the nurses remember you and some even remember THAT name. Sigh…

P.S. I have trouble sleeping here.  3am posting is correct.

Happy New Year!

Happy 2008!

I realized I haven’t updated this blog since we came home and I apologize.  It’s  been a busy December filled with blood draws, appointments, hep locks, meds, etc.  But, we did had a lovely, mellow Christmas at home.

Anyways, Christopher is doing GREAT!

He is back to his old self and then some!  We were quite worried that he’d take some time to learn how to walk, talk, sit up again but those qualms went away the week after we came home.  I’m pretty sure Christopher’s twin, Evan, was partly responsible for that.  Now, Christopher is talking up a storm, singing, running, laughing, dancing like any other 19-month-year-old.  I’ve dubbed him “Crazy Chris” because he’s just that – a crazy ball of energy and smiles.  And when you put Chris with Evan, it’s nonstop mischief!

Christopher’s medicine schedule is pretty much the same from when we left the hospital and we slowly tapering his steroids schedule.  He has the classic moon-face from the steroid use and I’ll be sad when those cheeks go away.

His lab work is beautiful with liver numbers being normal.  Our only concern now is his up and down on the weight scale.

When we left the hospital, he was 21 pounds.  And from his last appointment, he is down to 20.8 pounds.  I’m trying very hard to make him eat but he’s being like any other picky toddler.  I hope it doesn’t come to NG-tube feeding him again.

As for Jason and I, the stress melted away the moment we were on the road at discharge.  We are anxious for Christopher to get a fever or for his liver numbers to jump up, but for now, it’s one day at a time.

2007 was a blessing in disguise and we only hope for more blessings this year.

Thank you for your continued support!