“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

The GIFT of DONATED LIFE begins today. Her transplant surgery is scheduled for 7:00 am 08/06/2011

Back in the saddle again...

Today's report brought to you from 6th Floor Children's Hospital, Colorado....
Mercy was scheduled yesterday to have her Broviac procedure with Dr. Somme. As usual in surgery, she was a champ and did really well. We also got to see Superhero Alan and a few other favorite people here at the hospital. It's kinda weird to be back, it's been 9 weeks this time, but is also quite comfortable since Mercy tends to be quite a "celebrity".  Nice to see all of her friends again from surgery and the 6th floor :)
The plan is to keep her here this week to monitor her new feeding through IV and get her to "goal'. She has a small incision on her upper left chest with a single catheter that goes through her vein to her heart to administer nutrition through her blood.  Her first night being hooked up went great.  Hopefully this will help her gain weight and give her that extra 'ooumph' she needs to grow and develop physically. She no longer has her feeding tube for nutrition which was (I will admit) nice for medication administration (not so fun to put in as you know from past posts). Back to tasting the yucky stuff, sorry nugget.... :(
After discharge, Home Health will assist us with weekly dressing changes, blood draws and overall maintenance of the line.  Not too scary after dealing with the PICC line from before. I keep thinking.."wouldn't it be great if we got "the call" while here already?" Wait, that would be too convenient...lol.

Mark your calendar

                                                              Please Join Us
               By helping friends and neighbors raise funds for Mercy and her family.
                                                 Your Donations will make a Difference!
WHAT: Garage Sale
WHEN: Saturday, August 13th  7:30 am ~ 4:00 pm
WHERE: 302 Meagher, Bozeman Montana

Your $$ donations or sellable items in good condition will be so helpful. Your items can be received beginning now, until August 1st at these locations: 
                                  302 Meagher, Bozeman  OR  133 West Mendenhall, Bozeman
                                                    Call with questions:  406-581-6533

                                ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

                                                               Dance Your Socks Off!!
Appearing 60 times on the Grand Ole Opry, Wylie and the Wild West will be performing with additional entertainment by Don Elliot.
                                                      Come on down for an evening of fun and dance!

WHAT: Music Benefit for MercyMay
WHEN: Saturday, September 3rd @ 7:00 pm
WHERE: Music Ranch Montana ~ Paradise Valley ~ Livingston, Montana
                                     
           Tickets are $25 each                  Call  406-222-2255                Concessions will be available
                                                       www.musicranchmontana.net

                                                   ALL Proceeds will benefit MercyMay
                                                                     See you there!

"Tell me brother, can you see the sun where you're standing now?" ....

8th week on the transplant waiting list, 10th week of being away from home and can't believe we are in the 7th month of what has been our most challenging year ever. The little nugget will be celebrating her 9th month of life this week and it's looking like we will be spending her first birthday with her in Colorado rather than at home. 
We had an appointment with Dr. Narkewicz on Monday.  Mercy's "growth curve" has hit a plateau in several weekly visits which means she is not developing as well as she should (length, weight, head circumference, etc.).  Her weight has not increased OR decreased in several weeks now, even with the feeding tube and added nutrition.  If she has not gained significantly before Monday (7/25), she will be admitted to the hospital (now called Children's Colorado) to have a "broviac" placed.  I don't know much about it other than it is IV nutrition. It is similar to the feeding tube but requires minor surgery because it is placed into the skin.  As with ANY invasion of the skin, there is possibility of infection so my focus will switch to that home care routine rather than worrying about placing the feeding tube if and when she would pull it out (which btw, I got pretty good at and comfortable with!...Mercy, probably not so much ;) As with every scenario in this adventure, it is bitter-sweet. We will remain in the hospital for several days to make sure she is stable to return home (to RMH) and is adjusted to the broviac supplementation.  My wish everyday is that the process would get started and her liver would "come", then we could maybe skip all this in-between stuff.  But the reality is....wait, wait, wait.  Alot of people ask "have ya heard anything yet?"......I say to them, "trust me, the text will go out as soon as that call happens."  The Dr. did say that a few livers have come in but they weren't the "right fit". Damn, there's that bitter-sweet undertone again.  But like he said, there are going to be issues with a liver transplant no matter what (bitter) so let's try to keep the issues to a minimum (sweet). Agreed. 

WEEK 6......waiting....patiently

This Friday will mark the 6th week of Mercy being on the transplant list. We are more than ready to get this game started. The fundraisers were a great time filled with family, old friends as well as making many new friends.  We really appreciate the hospitality that Highland Pacific and its employees provided for us. Mama actually got to stay out, sans baby, for a few hours of fun!
Thank you to all who came and supported us.
My 13 year old neice came and stayed with me for a few weeks to help pass some time. She was a huge help and sure loves her (only) baby cousin.
Can't believe it's July already.  The entire weekend of the 4th was spent with friends while on Independence Day, Mercy and I watched fireworks out our RMH window.
Looks like we might even catch a Rockies game this week.
Mercy has been stable. She popped another bottom tooth and is certainly talking and babbling alot more. Won't be long 'til she figures out how to wave hello/goodbye...the fingers are movin' but don't quite know where they want to go yet :)

FUNdraising a good time.....

WEDNESDAY JUNE 22nd

Highland Pacific Restaurant & Oyster Bar 

3934 W 32nd Ave.
Denver, CO. 80212 

 .....  *LIVE MUSIC      *GOOD PEOPLE      *GREAT FOOD        *LIBATIONS  .....

We will be raffling a 2010 Fall tour poster signed by the band, a 1996 framed Warfield poster, a Y2K framed Warfield poster, a custom made WP pendant made by a dear friend of ours as well as other special donations being given to us for the event.  Tickets will be $5 each or 5/$20.
We also will have T-shirts and with Mercy's logo for sale as well.
If you have any questions, comments, concerns or donations...please send me an e-mail @ mercymccullough@yahoo.com

***Special thanks to those who have contributed and especially to Ed and his family for providing us a place to come together.

Happy Father's Day, Daddy
We love you!

beneFIT for MercyMay

WEDNESDAY JUNE 15th

and
WEDNESDAY JUNE 22nd

Highland Pacific Restaurant & Oyster Bar 

3934 W 32nd Ave.
Denver, CO. 80212 

 .....  *LIVE MUSIC      *GOOD PEOPLE      *GREAT FOOD        *LIBATIONS  .....

 Here's the scoop:

A friend of ours has offered his business as a venue to raise money for our family.  Ed and his wife also have a child with special needs, which comes with enormous medical expenses and have held fundraisers for her through their business with live music.  We have a very strong connection to music and believe it helps us with the healing process. We are asking you to come down and join us. Eric Martinez and Tori Pater will be playing both nights. If you are looking for a more laid back, mellow environment then I would suggest you come on the 15th, (restaurant opens at 4pm) have some dinner, a few drinks and donate.  Mercy and I will be available to mingle and chat (providing we don't get the call for her liver, otherwise we will be admitted to the hospital).  After 9pm, the party will certainly start to "pick up". 
As for the 22nd, the atmosphere will be a little more crazy :) Widespread Panic will be playing the following weekend at Red Rocks which is a HUGE deal in Colorado. From what we are told, the restaurant will be nuts by 9:00 pm.  We will be raffling a 2010 Fall tour poster signed by the band, a 1996 framed Warfield poster, a Y2K framed Warfield poster and a custom made WP pendant made by a dear friend of ours as well as other special donations being given to us for the event.  Tickets will be $5 each or 5/$20.
We also will have T-shirts and with Mercy's logo (see above) for sale as well.
If you have any questions, comments, concerns or donations...please send me an e-mail @ mercymccullough@yahoo.com

***Special thanks to those who have contributed and especially to Ed and his family for providing us a place to come together.

Let the sun shine down.....

Well, we are embarking on our 2nd week at the RMH. Crazy how fast time goes.  Dinner has been prepared by volunteers almost every night except Memorial Day. The Mile High Harley Davidson Chapter came by and passed out toys to the kids and let them take pictures with their bikes. I thought dressing Mercy in her I <3 (heart) MOM onesie was appropriate since I see alot of MOM tattoos on bikers, steroetypical for sure but funny.  Of course, MercyMay was a hit.  One fella even offered his liver, which was very thoughtful of him. I chuckled and said "no thank you, we're looking for a more lively liver". He  thought that was the funniest thing ever.  Yesterday, there was a lady volunteering chair massages in the lobby, I missed that one unfortunately.
So far, we've had a a few check-up appointments (labs have steadily elevated), three successful feeding tube placements (one with help, two by myself :), and stool gone acholic (lol....kinda like girls gone wild, but not really).   The purpose of the feeding tube is to "plump her up" and keep her in good condition come time for the transplant, so far she has not gained any weight. In fact she has been 6.7 kg consistently. We will increase the strength and duration of her feedings starting tonight.  In the meantime, still waiting for "The Call".....
FUN REPORT:
As awesome as the RHM is, the walls start to close in pretty fast so we are fortunate to have people near that come scoop us up for some fun.  Gotta take advantage of the good days. We have spent an afternoon in the park having lunch, cooperatively cooked dinner at the RMH with a group of friends, took a supply run to Target, had a fantastic dinner with friends at their home, checked out the Art Walk in downtown Denver and took a visit to the zoo.  THANK YOU!!
Daddy should be pulling in anytime, he is driving down for a weekend visit.  It's been almost a month since we have seen him so we are very excited for his arrival!

"Remember that spring will come, and roses will bloom again."

On Friday, I was down at the pharmacy picking up MercyMay's medications and on the way back to the room I met the transplant surgeons......Dr. Wachs (pronounced 'wax') and Dr. Bak (pronounced 'baahk')...I joked with them and told them they sounded like a website or somethng ~ "Wachs'n'Bak.com" ~ .... they chuckled and were very personable.  (I was told that Dr. Wachs likes to listen to jam bands during transplant surgery ... anybody want to compile a CD??)
Grandma and Grandpa got us all set up at the Ronald McDonald House (RMH) just down the road from the hospital so when we were discharged on Saturday afternoon, it was an easy transition.  We have decided as a family that it will be less stressful if Mercy and I stay in Denver until we get "the call". It is hard to be away from home, of course, because we do not know how long "the call" will take....could be weeks, could be months. The luxury of planning the future and having it work as planned is something I miss.

The RMH is absolutely wonderful and has thoroughly exceeded my expectations (good thing since we will be calling this 'home' for a while).  I am extremely impressed, not only with the building itself (only 4 years old, so almost brand new), but with what the organization puts together to make it all work.  It is ran strictly by volunteers. Nobody gets paid to do what they do here and the people so far have been fantastic. Every night (since we have been here) there are different groups cooking meals for the entire house. Usually dinner, breakfast and dinner on the weekends. Boy Scouts, Girl Scouts, independent insurance groups, church groups, The Children's Hospital.....the list goes on. (Too bad there wasn't a RMH in Bozeman, THE AOC could lend a great hand!) On the first night of our arrival, dinner was cooked by local high school students who, instead of going to dinner for prom that night, came to the RMH and cooked dinner for the house residents then sat down and had the leftovers for their prom dinner. After dinner they got dressed up and all went to the dance. Later that evening, the news station was covering their good deed and we saw ourselves on TV!  So good to see young people giving back to their community. 
Sunday morning, we headed down to breakfast with the Boy Scouts.  I had a young Boy Scout named Wade ask me if he could help me dish up my plate (I was holding Mercy), such a polite young man. After breakfast we gave hugs and said good bye to Grandma and Grandpa...thank you for all you did for us :)  Sunday evening, the Girl Scouts (Castle Rock, CO Troop #571 - shout out) were enamored by MercyMay. They just stared. I wasn't sure if it was her feeding tube, the picc line or the fact that she's so stinkin' cute ;)  Regardless, they all fell in love with her when I introduced them.  The girls were earning their Silver Medal Awards and their theme was COMFORT...how ironic. They prepared spaghetti, mac'n'cheese and salad for everyone....comfort food.  They also handmade blankets for the house residents "because we know that you are in need of things like that here"...so precious and thoughtful.  They especially picked out a "flower" theme for MercyMay because "she reminds us of a beautiful flower"..... so pure and innocent, love it!! 
The rules of the house are simple, clean up after yourself. There is not a maid service to clean our living space which is set up just like a hotel room. No food or drink allowed in the rooms. The kitchen and dining room area are occasionally cleaned by volunteer groups. There is a huge family room with a big screen tv, computer rooms and tv rooms on each floor (there are 3), laundry room with all ammentities provided through donations and several cozy spots to just hang out and relax. The list of awesomeness goes on and on.  I support the RMH 100%, if you have a chance to help them in your area, please do.

Yesterday we ventured out for our first appointment with Dr. Narkewicz as an outpatient. Felt good! He said she looked great, and so far from what I've seen, she has been doing a little better each day. In fact, I woke up to a plethera (lol) of bright, yellow poo ...hadn't seen that in over 3 weeks.  Dr. Narkewicz even seemed a little surprised. Her nighttime feedings will be incresased slowly over time to help supply her with the maximum nutrition she needs and that her body can handle. Little nugget decided to pull her NG (feeding) tube out at 5am this morning, so I have a huge task ahead of me tonite....replacing it.

<3



Wade :)



"Love is that which enables choice. Love is always stronger than fear. ALWAYS choose on the basis of Love"

The past week we placed a feeding tube in order to boost MercyMay's nutritional status and place her on continuous feeds during the night. Another bitter sweet. Never a good time watching something get placed down your child's esophagus...then the nurse says to me.."Are you going to give her meds to her through her feeding tube?" OM*G! What a difference!! Each morning we start out with 10 to 11 different medications/vitamins that were usually given to her orally.....this used to (literally) be an all day process......BUT NOT ANYMORE !! (Or at least while the feeding tube stays in).

This morning was the selection committee meeting for Mercy to be placed on the transplant list. Good news, she got accepted!! (which, Dr. Narkewicz told us, is usually a no-brainer with babies with biliary atresia) So now we wait for the insurance company to OK it, and hopefully get the call tomorrow that we are actually ON the list. We were told that she is the only pediatric recipient waiting on this region's list.... BONUS!! Hope this helps increase our chances of getting a healthy, perfect fit :)

Tomorrow marks 14 days on her antibiotics which means she will be taken off of them and monitored for 24 hours. If she is stable, doesn't spike a fever and stays relatively 'normal', we will be discharged this Saturday. Grandma and Grandpa drove down for the weekend to help us with the transition of leaving the hopsital and moving into the Ronald McDonald House (RMH), which has been extremely helpful.  Dr. Narkewicz is suggesting we stick around the Denver area for at least a few weeks for follow up so the RMH is our best option. It is very close to the hospital in a case of emergency. I will be required to change and replace her feeding tube weekly, monitor her continuous feed through the night as well as flushing and maintaining her PICC line.  A home health nurse will be assigned to us and come to the RMH to help with these things which is comforting.  Superhero Aimee said she is here to help also......everyone needs a superhero nurse friend in their life :)

Speaking of superheroes, UncleAlan (Dr. Bielsky) stopped by to see The Merc...always a pleasure to see him, it had been a few days. Mercy had been napping, heard his voice (I'm assuming) and came out of her sleep to give him a huge smile.  Those smiles lately have been few and far between, but for some reason, there's always one waiting for him :)

Although she is obviously not feeling her best still, we manage to get a few "Zen Moments" in, at least that's what we're calling the good, happy times these days.  Today's Zen Moments were accompanied with a beautiful bouquet of flowers (complete with my favorite, lillies) sent by some close friends back home. Flowers always add a ray of sunshine :)

Tomorrow we are scheduled to meet the transplant surgeons that will be taking care of MercyMay and we are looking forward to enjoying a day of peace, smiles, and grandparents. (A little sunshine wouldn't hurt either, Denver).  Good night to all........keep the positive vibrations flowing!!

"Fear of the unknown is normal...and it is okay to be afraid..."

Now that MercyMay's transplant evaluation is complete, the information will be presented to the Liver Transplant Selection Committee this Thursday.  They determine if she meets the criteria for transplantation and if there are any other issues to be addressed (so far, looking good).  Our transplant coordinators (who have been very awesome...easy to talk to... and available 24/7, 365 days a year) will notify us when we are placed on the list.
Her name will be placed on the list at The Children's Hospital and on a local agency list who works together with the national patient list maintained by (UNOS) United Network for Organ Sharing.  She will be placed by her weight, blood type and status, which depends on her medical condition. The more ill a child is, the higher priority they will have for organs that become available.  She will be given a PELD (Pediatric End-Stage Liver Disease Model) score based on the severity of her illness (hence the need for all the testing during evaluation). The score is calculated using lab test results, growth, age (remember, babies are a priority), weight and blood type.  If her condition changes (for better or worse), her status on the list will change accordingly.
The donor liver is matched to her blood type and body size. A large liver may not fit into a small patient.  Of all candidates who match the donor liver, it is offered to the person is is most sick. If all candidates are of similar degrees of illness, then it is offered to the child with the longest waiting time on the list.  Organ donors are usually victims of an accident resulting in an injury to the head whereby the patient is declared brain-dead (all activity in brain is stopped and irreversible).  The donor's blood pressure is maintained until the surgical team arrives to remove the organs by streile surgical procedure in the operating room.  Once the organs are removed, they are flushed  with a special solution that helps preserve them until they are transplanted. After flushing, they are placed in a sterile bag in a cooler with ice and transported to TCH (if not already at that location). TCH makes certain that both donor liver and Mercymay are in the best possible condition before transplant surgery can begin. Her nutrition is crucial so she continues to grow and maintain the best possible health.
Once MercyMay is on the list, we need to be prepared to come to TCH in Denver at any time, day or night.  On an average, most children will wait for their liver transplant anywhere from a month to years.
During the waiting period, she will continue to be managed by Dr. Narkewicz and our local physician. 

"In high tide or in low tide........I'll be by your side...."

The last few days have been spent finishing up the transplant evaluation process and waiting for her labs to improve, which is not happening. Today her ascites has progressed so we will not be discharged tomorrow as originally planned. The doctors from the University Hospital were taking a look at all of her imaging (MRI, EKG, etc.) today to make sure she is a good candidate for transplant.  Dr. Karrer thought everything looked great but wanted the backup opinion of the other transplant surgeons. Dr. Karrer, we found out, will be deployed to Afghanistan next week and will not return until Labor Day so he will not be doing her transplant if it happens during that time. That was kind of a bummer, but we know we are in GREAT hands and wouldn't want to be anywhere else.  Dr. Bielsky will be her anesthesiologist :) Dr. Narkewicz will present her case to the selection committee next week and hopefully she will be on the transplant recipient list shortly after.    **(50% of pediatric liver transplants done nationally are due to biliary atresia)
Then, you wait for "the call"......... the call that says another life has been taken and is ready to be given to MercyMay....this has been a very heavy concept to digest, but we are making the most of every day and we refuse to wallow in self pity....


On a happier note ~

Mercy got to hang out with our "mini-superhero" and talk "baby" with another toddler. She was pretty excited to share that moment with MissJojoEm....


~ DONATE LIFE ~
I know that there are many different people that read this blog (almost 4,000 hits!!) so I want to encourage all of you to become organ donors if you already aren't. I know it's a scary and crazy thing to think about but it could potentially be the biggest gift you have ever given.......
I am able and willing to answer any questions, comments or concerns you may have regarding MercyMay or the process in general...

MercyMay had her PICC line put in yesterday which (after the fact) is a great thing. The events leading up to it...not so great. We had to put her on NPO (can't eat due to anesthesia for the procedure) at 4:00 a.m. because her appointment was scheduled at 8:00 a.m..  No big deal because most of that she is sleeping. Then the doctors called down and rescheduled our appointment to 1:00 pm. So this meant, we had a half hour window to pig out, and go back on NPO.  Back to back "no eating" sessions, quite frankly, sucks....for both of us.  But it's over now, moving on.....The rest of the day was spent catching up on some rest and keeping her relaxed.
Her bilirubin is up to 11.7 (it shows in her eyes) and liver enzymes have not improved, but have not gotten worse. Sometimes the response to these treatments is quick and sometimes it takes a month or longer. However, the lack of significant improvement in the last week, has prompted them to begin the process of transplant evaluation.  This does not mean that we are "on the list" yet, but we have a gut feeling that says we're headed in that direction.

Mother's Day

Aaaaahhh.....nothin' like gettin' up at 4:30 a.m. for a blood draw! Now, if this particular blood draw gave us "perfect" numbers as a result, we would welcome "O'dark : thirty" with open arms! But, not today....

Her bilirubin is up to 10.1 (normal is 0.2 - 1.2), her liver enzymes have not adjusted much and her stool is still acholic.  Cholangitis, ascites and portal hypertension are all interrelated and have created the symptoms she is experiencing.  After doing alot of research on ascites last night, I had a whole slew of questions for the doctors when they rounded this morning. I was told that the cat scan showed that she has a clotted portal vein that is decreasing her flow which is common. The good news is, they have cancelled the notion of a leak in the surgical area (YES).  For treatment, they have increased her diuretic intake and also added a different one (LASIX) to help remove some fluid and discomfort. We have started another steroid burst over the next three days and she will continue her antibiotics.  The IV that was placed in Bozeman was not flushing well so we had to replace it.  The replacement blew up her vein so we had to place another one in her foot. Tomorrow, we are scheduled for a PICC line procedure so we will be able to administer her antibiotics at home after we leave the hospital. It also makes drawing labs easier, no poking involved.

UncleAlan (Dr. Bielsky) stopped by to check on us and give "The Merc" some lovin'. She was napping when he came, but she will be happy to see him in the morning after she hasn't been able to eat for 4 hours prior to placing the PICC ;)

For spending our first Mother's Day in the hospital, it was very nice and I even got a little spoiled. Early this morning UncaDoo brought me a breakfast bagel with crispy bacon ;), UncaJ and TiaLaura delivered flowers and a card from Rod :), we got to go downstairs to the gift shop and enjoyed a bit of singing and playing guitar in the atrium on the way and our superhero Aimee brought me dinner and a rice krispie treat...my favorite.

"Here comes the sun......."

"Be strong....Baby, please be strong....."

After a week of acholic stool and progressive fussiness, we were admitted Wednesday evening.  We spent Wednesday, Thursday and Friday in Bozeman Deaconess Hospital treating Mercy for potential cholangitis. Friday morning we drew labs and they came back with very little improvement.  We also did an ultrasound which showed pockets of fluid. The concern then is, a leak (bile spilling out into her abdomen), ascites or cholangitis.  She is extremely anemic so before we left we had to do a blood transfusion...can this get any more emotional???
Before I move on, I must tell you about a new special superhero we met in Bozeman and her name is Erin. Erin drew Mercy's labs for her with grace and ease and as you know, that is very important to me. THANK YOU ERIN!!!
After showing very little improvement in 48 hours, displaying actions of pain and just not being herself, Mercy and I were flown out by Life Flight again last night at around 3am.  Emotionally, today is a hard day. This is the hardest thing I have ever done.  Fortunately, the flight this time was not nearly as brutal as the last one. We made sure MercyMay was comfortable and I think her trip went much smoother for her, it did for me. 
I have been waiting for the team here in Denver to review the Ultrasound done in Bozeman so we can get a plan of attack going. I was just informed they will be here in 10 minutes to pick us up and take us down to have another Ultrasound performed.......... De. Ja.Vu.

Hi friends....Mercy is currently being treated locally for cholangitis. We are hoping it is that simple. Tomorrow we will have labs drawn to see where we are at. If things do not progress in a forward fashion, we will be on our way to Denver again. Stay positive, will keep you updated as necessary.
"Where there is LOVE, there is HOPE...."

"Every day feels like a holiday....when my baby comes home..."

It's official. The minivan has been purchased.....and we are loving it. 
Yesterday was a lab day which is always filled with anxiety while waiting for the results.  In the meantime we headed to Target (Aimee, I didn't see you there...?) to pick up a highchair for Miss MercyMay. After sitting in one for the first time at Grandma's, she was excited to have her own at home.  So cool to watch her get excited about the little things ... like the sound of lips smacking together after eating or drinking something really tasty followed by a satisfied 'aaah'.  She got so excited a couple times she was shaking ... so cute and so hilarious! While in Target, we get the phone call....."Mercy's labs are all over the place, so it's probably good you're going to Billings tomorrow to see Dr. Narkewicz".  
(Enter: thought process going wild)
(Enter: rational thinking ~ yellow stool + bile = good)
Then we get home to a message from Dr. Narkewicz's nurse in Denver .... "Mercy's labs are much worse". Her liver enzymes were elevated again and her bilirubin had increased a little.  You can imagine how we are feeling at this point. Wondering. Now what?

We arrived in Billings around noon today and met Grandpa and Nannie for lunch before the appointment.  MercyMay's first restaurant experience was a success. She was a very good baby.  After saying goodbye, we headed to our appointment. Nervous, wondering, over-thinking.........
Dr. Narkewicz examined her and said she was looking really good. Still has a little fluid remaining in the abdomen which should subside over time so we will continue the diuretic. Her skin color is normal, eyes are almost completely white and her stool is yellow. All signs of surgery success so far. So why the crazy lab results??  Well, turns out... we were comparing Denver's lab results to Bozeman's lab results and apparently, they are not comparable because each lab tests differently......what??? SO, the whole time we were stressing out about "worse" lab results and labs "all over the place", we were worrying for nothing?? Yep, pretty much. Wow. Would have been nice to know that. (I could probably rant and rave a whole paragraph here, but let's keep it positive :))
Dr. Narkewicz told us that Mercy will always have elevated enzymes and that the "normals" are not HER normal ranges. Basically, we have to start a new "base line" for her labs based on results we take at home since (hopefully) our travels to Denver for surgeries are done.  Of course, we still have to watch for signs of cholangitis (which would land us in Denver but does not require surgery), but for now she is healthy and doing great!  Dr. Narkewicz was pleased with her progress which made us extremely HAPPY.
We will follow up with labs in 2 weeks, 4 weeks and then see him again in June.
**** Moving forward ~~~~ > ****
We try to maintain an emotional even keel so we don't get too high or too low (which can be difficult at times). We never know what her disease will deliver daily so when we have great day (yellow poop, no fussy, etc.) we really savor it......it is truly like a holiday. Today was a great day :)

"The river is gonna rise....wash our struggles away....the sun is gonna shine....shine down on a brand new day"

Had a great day today. Mercy's sleep schedule has been quite erratic from being in the hospital again so last night was the first night of "normal" sleep. She woke up in a wonderful mood, and we woke up without sandpaper in our eyes! Her skin today is much paler and the whites of her eyes are literally sparkling . It's so nice to see those bright and shiny eyes of hers.  Pair those beautiful eyes with her happy smile and wow......life is grand.

All of her steri strips fell off her scar today and it looks like it's healing very nicely. Her stitch from her JP drain also looks good.  It's hard to tell that she has been cut open in the same place three times in three months. Ninja. Surgeon. Stig. Somme. Superhero.

Perhaps you are also wondering...."How is her poop?"  She will be so embarrassed when she gets older to find out we blogged about and celebrated her stool :) .... it has been bright yellow and stinky. She used to love to get her diaper changed because that's where her "clean-butt friends" are (song sung by Mom included) but lately she seems a little more annoyed by the process. Not sure what that's all about. She's probably a little wiser to the fact that her Mom doesn't have the greatest singing voice (although it usually sounds pretty good in the car with the tunes cranked...?).

Speaking of vehicles.....on our way home from Denver last week, our GMC was making some interesting noises. To spare you the details, we broke down right at the 7th Avenue Exit in Bozeman. Couldn't have been a more ideal situation, thank goodness (and Thank You Grandma for picking us up and calling the tow truck).  The repair shop mentioned something about bearings, brakes, potential fires and wheels falling off...?  Luckily, we didn't catch on fire or go off the road due to loss of a tire. We did however, make the necessary repairs that (of course) are not cheap. Sometimes it feels like ....life. just. won't. stop. 
Needless to say, the GMC will not be around after tomorrow. We went into town today to trade it off for a used Honda minivan. Yes, a minivan. We are now officially....parents. :) (pardon the really silly stereotype) We figure with the necessity of traveling to Denver in comfort, it's the right thing to do.

Tomorrow is a lab day (blood draw).  Never a fun time for anyone invloved, especially MercyMay....the one getting poked.  We have full confidence (and hope) that her numbers are still down and her liver is functioning properly without any further damage.
Also.... It's time for the nugget to start drinking out of a cup, so that's the new introduction of adventure for this week.  She is very interested in the eating process and watches us like a hawk when we consume food or drink. Her first attempt at the cup was a success, she catches on very fast. For being flat on her back in a hospital for a good portion of her short life, her motor skills are sharp and she is very aware.

So, that's the update. Hoping for a great visit with Dr. Narkewicz in Billings on Thursday. We will let you know how it goes. Until then...enjoy the rest of your week.

Home sweet home...

After spending two weeks in the hospital, we were discharged Friday afternoon!  I would have 'blogged' that day but you wouldn't believe how fast the room and the lap top gets packed once the word "discharged" is uttered.
After her drain was pulled, we needed to make sure she didn't have any issues and there wasn't any reason to stay in the hospital if not necessary. That night into the next day she slept alot but didn't show any signs of discomfort.  Dr. Somme checked in with us and agreed that she was ready to go home.  She still has some ascites and we have been sent home with a diuretic to treat it. Her body is not as full of fluid but her stomach is still distended, but soft.
She currently takes a liver medication (Ursodiol), a diuretic, Vitamin A, VitD , VitE, VitK as well as a multivitamin (ADEK), all 2x daily.  Sometimes it feels like all we do is give her medication. Her diapers have been stinkier and yellower (yes, I said yellow-er) than they ever have been!  Now, we can hope that the "classic" kasai procedure will do the trick and create the liver function she needs, all the while preventing any further damage of the liver. Sending strong messages into the universe for NO TRANSPLANT PLEASE.....Of course, there is a strong possibility we will be in Denver again to treat cholangitis when it happens. It is pretty much unavoidable, and we cannot go to our local hospital to treat it. We just don't know 'when' that will be.
Daddy stuck around an extra day so we were able to ride home with him.  MercyMay's first road trip! We stayed in Casper last night and finished the drive today. Home. Yes.
Next Thursday, we will see Dr. Narcewitz (sp) in Billings who is one of the liver specialists at TCH to check on Mercy's progress. Meanwhile, we will rest and relax. Try to get back to normalcy as much as we can and enjoy every day, for healthy days are a gift and a blessing.
Where there is love, there is hope.  THANK YOU for your continued support.




  

Thank you, Aimee!! Xoxo
Two Thumbs Up for ....... tasty dinners, scrumptious cupcakes, full bellies and wonderful superheroes! :)

 Had another stress free, sleep-filled evening last night.  Woke early this morning to news that we would be removing the JP drain today.  The amount of fluid and swelling of her body had decreased during the course of the evening and into today.  As a result, she looks much more comfortable and has been sleeping alot. 
Dr. Somme just gave us the "go, so her drain is currently being removed and stitched up. Yay! One more tube out, YES.
Now, all we have is the PICC line which we wil leave until her last labs are drawn and we are able to go home.  Slight discussion of a discharge but don't want to get too excited yet. Tonight, we will watch her to make sure the new plumbing system is working and we have no issues (fever, bloating, etc.).
We did have a great looking poop, nice and stinky!  (I won't descibe the color I really saw to spare you some details...but it was a good one!)  We are moving forward in positive directions. One day closer.

~ Found out last night that 'Jordan', the nursing student assigned to us the night before Mercy's surgery, has a last name of Elway. Very pleasant, beautiful girl. She politely asked me for permission to stand in and observe Mercy's procedure and I said "of course."  Turns out she's the daughter of some dude named John......  ;)

Gimme a kiss on Tuesday........

Woke up to a bright-eyed smile this morning!! Daddy made it in last night after braving blowing snow and traveling 65 mph most of the way.  So glad he could make it :)
The past few days, MercyMay has been retaining alot of fluid in her abdomen as well as the rest of her body.  Her belly is very distended. It's hard to see her puff up like that. Still no fever which is great. She is dumping quite a bit of fluid into her JP drain still, so yesterday they took a sample to make sure there was no bile present. No news was good news, then this morning during rounds the surgeon team said the percentage was low and that meant the bile is traveling through her blood and not escaping out of the drain. Now if we could also see some evidence in her stool, we would be on our way to victory.  She only had one small bowel movement yesterday, and haven't seen much action today. She has been on pain medication that can constipate her too, so it's a constant "wondering" and "guessing" and trying to aleviate any issues she may have, trying not to create more issues....
Last night we had our favorite nurse, Aimee. She takes very good care of this little nugget. We had a pain free, stress free night thanks to her caring spirit and loving heart. She works again tonight, so we will get to see her one more time this week.  We both agreee that it would be more pleasant to see each other at Target or the grocery store, but it comes with the territory.  Hopefully we will be discharged by Saturday (her next day on) which is so bitter sweet when it comes to saying "goodbye" to the special heroes and friends we have made here at the hospital.  Thanks again, Aimee :)

Today has been a great day. My first text this morning was from a very close friend of mine and I feel like sharing :)  It read: 
"Good morning .... It's a beautiful morning, crisp air, and warm sun. I think it will be a good day for The McCullough's."    Right you are my friend, right you are.
Mercy's labs were drawn today and her liver enzyme numbers came back in double digits in the normal range!! She has been in abnormal triple digits since we found out she was ill.   Her total bilirubin level has also dropped significantly, although not quite "normal" yet.  Any good news is great news and it takes time. So YES, the morning was beautiful and the day is good.  :)

Woke up...it was a Monday morning

Daddy's coming today!! Really excited to see him. 
Mercy woke up with a slight fever. She was wrapped up pretty good in blankets last night and got to sleep next to her mama so we are hoping those are the contributing factors. Doctors made rounds this morning and said she's looking good...and happy. She's always happy :) (except when she can't eat - just like her Daddy).
The ultrasound yesterday didnt show any clotting in her PICC line which is awesome. The removal of the Foley (catheter) was a success and her epidural site is looking good.  Her JP drain is still putting out quite a bit of fluid, so the goal this week is to see a decrease in the fluid and see some more action in the poop department. Nothing happening yet today.....come on green, stinky poop.  What I wouldn't do to see a little diaper rash....that would signify bile flow.  She is able to eat "ad-lib" meaning when she wants and as much as she can tolerate.
Today, we will continue to enjoy the lab holiday, continue to root for stinky poop and diaper rash, all while waiting for Daddy to come.

Baby breathing deeply.......listening to her heartbeat

Over the last 24 hours, Mercy has put out 500 cc of fluid (she has a JP drain attached to her inside). Currently, she is sleeping with her resting heart rate at 160 .... should be 130 -140. Dr. Mack thought she might be a little dehydrated, so we are taking precautions to make sure that doesn't happen. Her stomach is still very swollen and not as soft as it could be. It's a little soon after the surgery to determine whether the swelling is from the surgery or actual fluid in the abdomen called ascites.  If this is the case, they will treat it with diuretics. 
She had a greenish looking poop this morning...awesome. The not so awesome part is that it traveled up her back a bit and has the potential of contaminating the epidural site. I was told that this could cause menangitis if it sits contaminated longer than 6 hours. Scary. So, her pain will be aleviated with iv medications after it is removed. They will remove her catheter as well. Two more tubes out of the body, done.
So, while we are continuing to rest, heal and enjoy the lab holiday, we will keep an eye on her and hope for positive results in the next coming days.

ME: "Oh, look! She's holding the bottle (of Pedialyte) all by herself!"
BRANDON (my brother): "Let's see you go without eating for 39 hours and see if you hold your brisket!"
(Enter: laughter and empathy here....we were enjoying some great barbecue in front of hungry Mercy at the time)
My brother and niece drove down from Minnesota, braving the closed, snowy roads of Nebraska early Friday morning.  Mercy loves her Uncle B and CuzE. 

The little nugget is recovering really well.  They performed the "classic" kasai procedure which is the attachment of the small intestine to the liver.   The same morning Mercy was in surgery, another little girl we met prior (9 months old) with Biliary Atresia named Ayvrie was having her liver transplant with Dr. Karrer. It was surely a day of blessings. Positive vibrations sent to her and her family for speedy recovery......

In order to manage her pain, Mercy has an epidural placed. SuperheroUncleAlan stopped by to check on us and make sure she was still comfortable.  I also requested that a PICC line be placed in order to eliminate as much needle poking and prodding as possible. No need to repeat that nightmare again. Her incision looks fantastic for being cut into three different times.  And so we waited......patiently.....for stinky, yellow poop. Or ANY poop for that matter....sorry to be so blunt here).  In her previous surgeries, it took a while for her insides to "wake up".  So far, we have seen the right color come out since the day after surgery. For some, the diaper changing process can be a drag. For us, we will change those dirty, stinky, nasty, green, yellow magnificent diapers all day, every day.........bring it.
Friday night, we were really excited because one of our favorite superhero nurses would be taking care of us. She was our 'Alan' that evening. We love her. Thank you, Aimee ;)

Today, we managed to get in a wagon ride around the hospital. Anything to take her mind off the fact that she was starving.  I learned that some Children's hospitals (Boston), but not all, consider breast milk to be a "clear" similar to Pedialyte. Fortunately, the surgeon on call that came to speak with me about feeding shared this thinking and gave me the green light.  Otherwise, she wouldn't be eating until tomorrow when we heard from the surgeon team again. That's brutal for anyone.....

My family leaves tomorrow, very glad they came down. It means alot. Tomorrow, I will still be on the lookout for yellow, green, stinky, etc. Sunday and Monday are "Lab Holidays"...meaning there will not be any blood drawn. She has given her fair share since we got here....a break is necessary.

Good night

Sleeping. Resting. Healing.

"There are always flowers for those who want to see them......"

Currently, MercyMay is doing well in surgery. The nurse calls me about every 45 - 60 minutes and updates me on her condition.  She couldn't be in better hands. Stay strong little nugget!!!!

Allow me to take a moment and tell you about Alan Bielsky. Alan is one of our heroes here at the hospital, there are many .....
The first time Mercy was admitted for surgery, it was obviously very stressful for Rod and I. It was the first time I had been away from her since her day of birth, and the first time she was left in a stranger's hands. We were taken to a holding room where we met the surgeons, nurses and anesthesiology team (awesome people, all of them).  Alan was her anesthesiologist. Mercy was very hungry and clearly upset about not eating....Alan took her in his arms and she stopped crying immediately. The way he held our baby and showed us comfort and empathy in such an emotional and crazy moment was unbelievable. Mercy felt his good energy...he told us he was going to take great care of our baby and followed through with his promise.  Not sure who he was comforting more...us or Mercy :)
It's funny being here. I am a people person so it's easy to feel close to those that help you in a time of crisis or change. The flip side is, as an employee of a hospital, that relationship has to stay neutral for obvious reasons. Mercy doesn't allow that to happen. She grabs the heart and tugs and tugs and tugs....therefore it's easy to fall in love with her. So, today I asked who our anesthesiolgist would be......hoping for Alan.
"Dr. Carter will be taking care of Mercy today." Ok, cool.  So I proceed to tell the nurse how special Alan is and about our first experience with him. He IS The Baby Whisperer (at least ours anyway).
Alan (dressed in professional attire) saw us in the holding room today. He came in to say hello and asked to hold "The Merc".....yep, you guessed it. She stopped crying immediately and instantly felt his good, positive energy. I looked at the nurse like "...see, told ya so!" 
Every bit of anxiety, doubt or fear I had was now diminished.  Every little thing is going to be alright. Alan passed her back to me, peaceful and asleep. Next thing I know, Alan returns in full scrubs. He switched his schedule to take care of Mercy today...... :)    Thank you, Dr. Bielsky.
So now, I sit in the room.....waiting. Waiting for our precious little girl to wake up from surgery and start the healing process.  The next few days will be intense as she is recovering from a pretty heavy duty organ revision. Will keep you all posted as best I can. Thank you for your positive vibrations....((((MUCH LOVE))))

Brings peace to watch a baby smile......

Dear Daddy,

I know it is hard to be away from Mama and me (we miss a zoooooo), but I want you to know that you are doing a great job.  While Mama is here taking care of me, you also have a big job......taking care of our house, Nesta, Rivers, CeeCee. It is important to our family to have that sacred space that you are protecting for us. I will be strong and brave for you tomorrow, don't worry about a thing. Because, every little thing is gonna be alright.
Thank you for being so strong. I love you.

Love,
MercyMay

".......my strength lies solely in my tenacity”

Surgery is scheduled at 7:30 am tomorrow with Dr. Karrer and Dr. Somme for a "kasai revision". 
She had labs drawn at 4:30 this morning which showed a significant increase in her total bilirubin level..... 8.9 (normal range is 0.2 - 1.2).
No solid foods, formula or breast milk after 1:30 am tonight....clear liquids until 5:30 am.....then we're on our way.
MercyMay wants you all to know that she is in good hands. She is healthy, happy and ready to be well.  . 
Thank you for your support, positive vibrations and LOVE........she is a hero.



"Inside every child lives a superhero who is SWIFT and STRONG."   TCH Denver

“Tragedy is a tool for the living to gain wisdom, not a guide by which to live.”

Spoke with Dr. Karrer this afternoon and it looks like we're headed to surgery on Thursday or Friday(TBA).  Twelve days of acholic stool, elevated liver fuctions, swollen abdomen, jaundice re-appearing in eyes and skin, failed attempts with steroids and no sign of cholangitis are all factors pointing us in that direction. In her previous surgeries, her gall bladder was attached to her liver. This time they will perform the full kasai procedure by attaching the small intestine instead. 

Well, after 4 solid hours of "clear liquids" only, my baby is finally able to eat. The good news is, she is not on her way to surgery (yet).  Since this morning she has had two bowel movements.  Dr. Karrer just stopped in, checked her diapers and saw a little bit of color in one and the other still acholic. Promising .... but not quite where we wanna be. 
So, the plan is to watch her for the next few days, continue the antibiotic and re-assess on Wednesday.

Patience is a virtue.....

Spent the weekend waiting patiently for yellow, stinky poop.  The stinkier and more yellow it is, the more things are going in the right direction. Needless to say, we didn't see yellow poop, much less stinky, all weekend. Her steroid burst was started on Friday, yesterday (4/10) was the final dose. Last night, she was scheduled for lab draw to see where her liver numbers were.  Blood draws on Mercy are very difficult due to her tiny veins and very slow flow. In order to keep things on a more positive note and to make a long story short, her labs were due at 6:00 pm, but were not actually (completely) drawn until 10:00 pm.  The results came back showing very little change in the numbers. We were told to prepare for an "exploratory" procedure meaning they may want to "look around" to see what the issue is. There is a chance that she will need another surgery, this time attaching the intestine to the liver rather than the gall bladder.
So, in preparation, she has not been able to eat since 6:00 this morning.

E-mail address

mercymccullough@yahoo.com

....she's got wings.....she's got wings

We arrived at TCH around 4:00 am. Thursday (4/7).  We both were very tired, it had been another long evening without much rest.  Her labs were drawn and came back with a high bilirubin count (bile build-up) as well as elevated  liver enzymes.  The diagnosis so far is one of three, but not quite sure yet:
 1.  Bile duct obstruction......basically just a build up of "stuff" (blood, plasma, fluids, etc.).  Dr. Karrrer says this is the most likely but we can't be sure yet. It is treated with antibiotics and  a much heavier dose of steroids, perhaps intravenously (IV) rather than oral.
 2. Cholangitis.....infection of the bile ducts. Symptoms include fever, abdominal pain and dark urine. Mercy has not experienced any of these as of yet. However, other symptoms include acholic stool and jaundice, both of which she currently has.
3.  Surgery was unsuccessful.....meaning the connection between her gall bladder and liver is failing. Treatment would mean another surgery, this time attaching the intestine to the liver rather than the gall bladder. Considering HOW LONG we went post surgery without any issues, this is the most unlikely answer....thank goodness.
So, where are we at today, right now?
We are waiting to get her labs drawn again which will tell us which direction to go based on what I desribed above. She will have a new IV placed also since the one placed at home was not very comfortable for Mercy.  This will allow administration of the steroid if necessary.

 

Sitting around, waiting for an airplane.....

Well folks, wish I had something better to blog about but unfortunately I do not. 
The morning of the cut-a-thon, Mercy woke with an acholic (white or pale gray) stool. This usually signifies a lack of bile drainage which, as you know, is the core problem of her disease (biliary atresia).  We placed a call to our doctor and later that evening, we found ourselves in the ER. Not the exact place we wanted to be after such a fantastic day.  She was given a broad spectrum antibiotic shot to cover our bases if any bacteria (cholangitis) had developed. Cholangitis is an infection in the bile ducts and should be taken care of ASAP as to not damage the liver any further. On Sunday (4/3) we met our Doctor at her office and she administered another shot of antibiotic. Mercy was also put on what they call a "steroid burst" for the following three days. The steroid is supposed to help with any inflammation, perhaps due to getting her drain taken out or maybe the surgery itself was experiencing some swelling. At this point, we were trying anything and everything to cover all bases.
By Wednesday, her stool had not gone back to normal, blood tests were elevated and we were starting to see the jaundice building in her eyes.  We placed another call to our doctor.  Long story short, Mercy and I were life flighted from Bozeman to Denver in a small jet plane at midnight on Wednesday (4/6).

"Only in darkness can we see the stars...."

On Saturday April 2, the staff and students of The Academy of Cosmetology held a cut-a-thon which they dubbed........"Have a heart for Mercy".  And boy, do they! 
A friend of ours recently expressed our feelings perfectly....she said that words tend to diminish the feelings of gratitude and appreciation a person feels when someone else has gone above and beyond for them.  Above and beyond is an understatement for the hard work everybody put into making the cut-a-thon a huge success. Planning started months ago when Mercy and I were still in the hospital.
The Academy has sponsored a cut-a-thon every year for the last 4 years with all proceeds going toward The National Center for Missing and Exploited Children. It's a pretty big deal around the school, so it was decided this year that the fundraiser would be held for Mercy May to help our family offset medical and travel expenses. 
Several businesses around town, current students and graduates of the school donated prizes for the raffle that was held. (Good luck to those of you that bought tickets!! Prizes will be drawn this Tuesday morning in theory class. Winners will be notified immediately.)
Each student donated their "tips" for the day as well as performed services on the public. 
Everyone was dressed in pink to honor MercyMay and they even made her a custom outfit that they all signed. 
Needless to say...they had fun, did a great job and raised alot of money in the meantime.    SYNERGY
THANK YOU
You are all fabulous, fantastic, first-class people and may all you do for others be returned to you in the same unsurpassed manner it was given to us.

Quick to smile precious baby

FUNdraisers happenin' for Miss MercyMay....

Saturday April 2nd
Cut-a-thon Academy of Cosmetology
            133 west Mendenhall
            Bozeman, MT
            (406) 587-1265 or 1264
     

Wednesday June 22
Live music benefit
Highland Pacific Restaurant
          Denver, CO
          www.highlandpacific.net



Donations can also be made at:
Wells Fargo (any branch)
Mercy May McCullough Foundation
Acct #2655768204