"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...."