“It is not the critic who counts;

not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly;

who errs and comes short again and again;

because there is not effort without error and shortcomings;

but who does actually strive to do the deed;

who knows the great enthusiasm, the great devotion, who spends himself in a worthy cause, who at the best knows in the end the triumph of high achievement and who at the worst, if he fails, at least he fails while daring greatly. So that his place shall never be with those cold and timid souls who know neither victory nor defeat.”

~ Theodore Roosevelt

A raft and a song.......

It's been almost three months since we left Denver....here is my attempt to catch our blogged life up to speed.
After being discharged from the hospital post-transplant, Mercy remained well and stable so we were able to finally come HOME on September 12, 2011. I was excited and nervous at the same time. We came home with her broviac which made weekly lab draws very convenient. A home-health nurse came out every Tuesday to assess her and take blood. Soon, weekly lab draws turned into bi-weekly lab draws. Her labs have been perfect since transplant, no issues.  Because of this, our feeling is that Mercy's body has "accepted" her new liver and will continue to do so...
She is currently taking two anti-rejection drugs, one that has gradually been tapering off and will eventually be omitted plus, the other which she will take for a lifetime. These medications esentially kill her immune system so she also takes an anti-viral, anti-bacterial and an anti-fungal.  All other medications are to offset the side-effects that these medications cause. Because Mercy has no immune sytem except for her natural immunity (which we do everything possible to treat with great nutrition and whole foods), she is obviously very succeptible to getting sick. She cannot get sick.  So, when I opened up the newspaper recently to read about the 30+ cases of whooping cough in our area.............It's scary. It's real stuff.  We have always been careful about our public practices in order to help protect Mercy and trust me, we get the stares. It's too bad the newspaper doesn't educate the gazing public on infection control practices while reporting the facts involved in the "story" and give people the information they need to learn how to NOT spread disease (ex: hand-washing, yes.....it's that simple). 
Being home was the greatest feeling in the world, especially because Mercy was (IS) doing so well. Oddly enough though, coming home proved to be a little more difficult and challenging than I had anticipated. It's crazy....when a person goes through tragedy, time seems to stand still for that person. Especially when "time" is all they count on, every day. For everyone else, life goes on....without the person experiencing the tragedy.
I also had another uneasy feeling for several weeks after coming home that I could not pin point. Then it dawned on me that every time this year that we had come home from the hospital in Denver (there were several prior to transplant), we would end up back down there.  So with that came some fear, anxiety, and nervousness. I think we are finally over that feeling.
At the end of October, we celebrated her first birthday (!!!) and also made (what we hope) our last visit to the Children's Hospital Colorado. She had a minor O.R. visit again to remove her broviac. As usual, she pulled through like a champ and we got to say "goodbye" to all of our superheroes at the hospital. Bitter, sweet....sad, but positive. The birthday party was quite a celebration and quite an emotional day with a huge sigh of relief that we were able to celebrate with her.
Now, we are doing our best to return to a life of 'normalcy'. Our schedules and income have changed drastically in order to care for Mercy the way we feel she needs to be cared for. I recently returned to work one day a week and am trying to find my place in a job I worked very hard for over the last 11 years and feel like I am being muscled out of. The bills continue to find their way to the mail box from her first two surgeries, prior to her insurance coverage. It's amazing how a person can work their working years in life to get "ahead" and how quickly all that can be taken from them. But, this is not about a Mom's pity party, what's important is that Mercy is healthy, happy and living in a home of love, good vibes and happiness. The rest really doesn't matter....(at least this is what I keep telling myself ). And change, although uncomfortable, can sometimes bring bigger and better things. Let the universe unfold as it should.....

There is no way we will ever be able to thank the ones that truly supported us in this journey. We hope you know who you are, there are too many to mention here. Words seem to diminish the true feeling of gratitude we have for you all so with that being said, no matter how large or how small your support has been, we THANK YOU. With your help, we made it through.
Keep spreading the LOVE......

".......you came along with a raft and a song and I'm so glad you could make it....
with you by my side I might get back alive from my...............next Vacation"    M.H.

Feelin' Good

Birds flyin' high, you know how I feel
Sun in the sky, you know how I feel
Breeze drfting on by, and you know how I feel

It's a new dawn
It's a new day
It's a new life for me
And I'm feelin' good

Fish in the sea, you know how I feel
River runnin' free, you know how I feel
Blossom on the tree, you know how I feel

It's a new dawn
It's a new day
It's a new life for me
And I'm feelin' good

Dragonfly in the sun, you know what I mean
Butterflies havin' fun, you know what I mean
Sleeping peace when the day is done, that's what I mean

It's an old world
It's a new world
It's a bold world
For me

Stars when you shine, you know how I feel
Scent of a pine, you know how I feel
Oh, freedom is mine, and I know how I feel

It's a new dawn
It's a new day
It's a new life for me
And I'm feelin' good

~ perfect words courtesy of Joe B.

"All that music waiting inside....."

One week post-op and Mercy is doing remarkably well!
Thursday night, we both got the best sleep we'd had since being in ICU. Part of that is due to the amazing nurse we had (Superhero Aimee!! Thank YOU!) and the fact that Mercy is healing quickly, responding quickly and in great spirits.  Daddy came down for the weekend!!, and is thrilled to see her progress.  It feels soooo good to see her feel good. She deserves it. Each day is one step forward filled with big smiles, laughter, new gestures, smirks, bright eyes and stinky, BROWN poop!!!  (Now, that's some good shit!  LOL)
Her second JP drain has also been removed as well as her IJ in her neck.  We are looking at possible discharge early this week already.
Over the last few days, her labs have normalized which Dr. Narkewicz gave the"double~thumbs~up" (a rare display of personality coming from him, nice to see). Her pain control is much better, and she is well on her way to recovery.  Upon observation and coming from experience with other transplant patients, our nurse Robyn (enter another Superhero...Thanks, you were great!!) said Mercy was making a "miraculous recovery".
Mercy has been showered with gifts. A "Bag of Fun" came, stuffed with toys, a wagonful of goodies for us both came from Aimee's mom and her friends, Superhero Alan stopped by to check on his little 'girlfriend'....the amount of support we have is amazing. The people we have met will be friends for a lifetime. Everybody turns HEROES.....THANK YOU
Tonight Mercy was finally free of any IV hook-up so we enjoyed a celebratory pizza party in the cafeteria with good friends. Tomorrow, Rod and I will celebrate our anniversary. There is no better present than seeing MercyMay happy and healthy. 

Look at all the souls shakin' LIFE......

Going into the second surgery following transplant was obviously stressful but it was the best decision made.  The procedure proved to be beneficial and we, along with Dr. Wachs, feel comfortable knowing that it was taken care of immediately. She spent the entire day and evening resting and healing with no major issues. 
Today, Dr. Wachs removed her feeding tube, one of her JP drains and an arterial IV. She still has a JP drain on the left side as well as her broviac and catheter. Many of her medications will now be given to her by mouth, which she seems to really enjoy (for the time being).  The hard part now (for me) is maintaining her pain since her pain meds will start to be weaned from her IV and given orally. She has been a little fussier than normal for most of today so I assume pain is what she is fussing about. 
She has been allowed to breast feed and has tolerated her feeding very well, of course.
We are hopeful that tomorrow we will be discharged out of the PICU and heading upstairs.  We have been moved to a different room in the PICU that does not require a single nurse to tend to us so that means her "needs" have become less and monitoring is not as critical. Great signs we are moving forward.
Earlier today, I was able to meet two families that have gone through the transplant process and share a bit of our stories with each other..
Lela, a beautiful little girl, is celebrating her 3~year anniversary of liver transplant later this month and is doing very well.  She was also born with biliary atresia and was transplanted at 7 months old. 
Evora, a beautiful, blessed 10 month old, just had her transplant last week, days before Mercy.  She had a different, very rare liver disease other than biliary atresia. Due to complications with the donor liver, it did not "accept" so Evora had to endure a second transplant.  My heart hurt for this family when they shared this. What they and many others don't know is that we were called that Tuesday to potentially receive that organ and were prepared to be on "back-up". Both Mercy and Evora share the same blood type. After what we have been through, I probably would have suffered an emotional breakdown if that would have happened to us after all we have been through. Thankfully, that was not part of our journey, very unfortunately it was part of theirs.  Sharing that with the family was not important. What was important, was that they got a second chance to make it right and Evora is doing great so far.  For this, they called Dr. Wachs a HERO (he was their surgeon also)....I smiled, and agreed wholeheartedly. Definitely another Superhero on our list :)
Thank you, Mikey ;)

Big City Doctor, fix me up and make me right....

Alot has happened in the last 48 hours so I will do my best to catch up to speed. We are currently in the Pediatric ICU (picu) which allows Mercy to have constant, undivided attention.
Transplant surgery went really well, Dr. Wachs was very pleased with the results. I was able to finally see her around 3:00 pm. She was bright~eyed and feisty as ever. She IS a rockstar.
The new liver did not have to be 'cut' to fit which can help present fewer issues with bleeding and other things. Sweet.
Because the liver was donated from a child twice Mercy's weight, it can tend to be a little big at first (more on that to follow).  Immediately following surgery, the medical team pays very close attention to fluid retention, glucose levels, electrolytes, blood pressure, pain management, etc. (There are too many "etc.'s" to list)
The first night out of surgery was a little rough. There was constant traffic in the room. Many hours of comforting and soothing her on my part, all hours of intensive care on the medical team's part. She experienced a "3rd degree heart block" about 3am that scared me (and our nurse) tremendously. She was immediately hooked up to an EKG, which ended up being "normal".  Positive. They performed 2 ultrasounds on her to monitor her blood flow through her portal vein and elsewhere. The blood flow was evident in most areas but didn't have a strong signal in others.
The following morning (yesterday), another ultrasound was ordered, this time Dr. Wach's observed. He was concerned with blood flow through the portal vein which has been an underlying issue for Mercy since the beginning. (Portal vein thrombosis) Very important because obviously the new organ needs to have the blood supply it needs to function. 
We were told that Mercy would more than likely end up in the OR again following transplant so the news to follow was not unexpected but never easy to swallow.
Dr. Wachs was "on the fence" about taking her in to OR. I had came in the room and mentioned that Mercy's belly looked much more distended today and was much firmer to the touch.  Her girth was measured and indeed it showed an increase in size. Being very in tune to mother's intuition and following his own intuition (the sign of a GREAT doctor, in our opinion...huge respect for that), he decided to take her in.  Bitter: gotta open her up again...Sweet: by looking inside, not at a machine's view (ultrasound), we would know FOR SURE what was happening . If things are looking great, awesome, sew her up and don't touch a thing.  If things are not great, we take care of them now and not wait til "later" and have more issues. We will take this scenario any day over 'Rejection' of the new liver. Dr. Wachs can unclog portal veins, he can't force the body to accept it's new gift........
So, it was agreed....we were on our way to another surgery.....1:00 pm Sunday 08/07/2011


"You can sit in the grass if it feels good....
You don't even need to say a word....
You don't have to worry................at all"

I love you since before the day you were born, child.....

After staring at the computer screen for quite some time now, I'm trying to figure out how to begin this blog entry. I have experienced every emotion possible. Fear, joy, excitement, anxiety, sorrow, guilt, fulfillment, empathy and others I cannot find a word for.....the tears tend to come and go. Thinking about our little girl and about the family of a little girl who was lost in order to give Mercy her gift.......that is HEAVY.
Almost three months on the list. TIME is a crazy thing.
"The call" we have so anxiously waited for came yesterday afternoon. A double rainbow was shining bright in the warm Colorado sky later that afternoon. 
We were admitted to the hospital last night at 7:00pm. Once here, they took her labs, vitals and a chest x~ray to prepare for her transplant surgery. The liver was recovered and inspected by surgeons in the midwest and flown here early this morning.  Surgery was scheduled at 7am today, they took her from my arms shortly after.
So far I have received one update. Diane, the transplant coordinator, will call every hour to tell me how she is doing. She was sleeping (anesthesia) peacefully while placing her lines (IV) and the breathing tube. Her incision had not been made yet. The donor was around 15 kg, about twice Mercy's size. We figure she was about 2 years old or somewhere close but due to confidentiality of both parties involved, we do not know specifics.  Dr. Wachs was hopeful that the new liver would not have to be cut to fit into Mercy which will be determined when they are ready to place the new organ.
I have been asked "how long will surgery take?"  I was told that TIME is of no concern. If they tell us it will take 8 hours and it takes 10, then as parents we're like "something went wrong". If they tell us it will take 7 hours and it takes 5, we will be like "what did they skip".....again, something out of my control. The surgeons are in the driving seat. My seatbelt is fastened.

Sidenote for PanicKin:
Dr. Wachs took his kids to the Saturday and Sunday show and has a steal~your~face tat on his upper arm. He likes to listen to jam bands during surgery so I told him Mercy was named after a song and he said..."I know that song"..... we have made plans to attend next year's Sunday show with him :)
Aint Life Grand is my listening choice at the present moment...this experience has shed a whole new light on how I hear the music. Music IS the therapy (Kammerer family <3). I encourage you to take a listen also.
I'm not alone...I'm just Blue
xoxo