Day 2 jam packed!

This morning we started off with breakfast here in the hotel with all the families. Mark Wills (country singer) sang a song for us then Happy Birthday to twin girls who turned 9 today. Made me miss Makayla as it is her 2nd birthday today.

Logan, Luke, Mark Wills, and Carline

Carline, Luke, and Logan

Sorry about the sideways pictures.. please just turn your head to the side!

Luke's official (with my not so official) 2012 Champion of PA picture.

Logan, Luke and Carline

Luke with Miss America

She was so great and you can tell really cares about the kids.

After breakfast we all headed out to the Capital Building to have the official pictures of 2012 taken. 

Luke is third row to the left of Miss America (on the right side).

We ate lunch at one of the Senate buildings in a Senate Hearing room. Luke thought he should get up and speak. The kids had great fun doing this!

Then Logan and Luke sat where the Senators sit and did some more speaking (it got really loud).

At lunch Miss America sat with us... and Luke was in rare form... after calling her Mrs. America and being corrected that she was a Miss he insisted he was NOT going to marry her. She even got it on video! Many years from now we will remind him of this!! Laura is so incredibly nice and it was really an honor to get to know her. The Miss America Foundation has worked with CMN for 20+ years and they do a lot to help the organization out. Her personal endorsement it to help children of parents who are in prison. She has a music/voice degree already. There is definitely more than looks going on with her! One thing that was a bit disturbing was going to the bathroom and washing my hands and looking into the mirror next to her... geesh after so many children and so many days in the hospital looks tend to take a big back seat... nothing like standing next to Miss America to remind you of that!!!

Logan and Carline showing off their PA made candy they got from the Senator's office. 

Afterwards we went to Senator Casey's office for a tour. He was not there today but his staff was supposed to take us around for a personal tour. After over 45 minutes past our appointment time this happened:

Luke was fast asleep.

Finally someone came in and told us the office had overbooked for the day and would we mind just getting the regular pass for capital tour with a tour guide. Geesh what do you say to that... uhh.. OK. Just wish they would have said that from the start and not made us wait almost an hour to be told that! I understand we are not big donators, etc so no big deal but the wait was a little annoying. 

We did get to see his office and the underground tunnel that connects the buildings in the Capital.

The kids in Senator Casey's office. This was once John F Kennedy's office when he was a Senator.

In the senate building each state has donated 2 statues. This was a statue of Helen Keller who all the children knew about.

On our tour. We had a great tour guide who was so good with the kids. Our children really were into it and asked some good questions. 

Luke had a long day so I had to go back and get his wheelchair out of the hotel room. He walked a lot and he needed a break. We haven't used it in a while but all the hospitalizations this year have deconditioned his body.

We went out for dinner at a nearby bakery which the kids enjoy.

After dinner we went to the Air and Space Museum and saw an IMAX movie and got to explore the museum all to ourselves. They really have gone "all out" for the Champions and their families!

Logan, Luke and Carline exploring

Luke figuring out how pilots used to fly by landmarks on the ground.

He is very glad his volunteer pilot, Joe, has much more high tech equipment!

Fantastic food there.. these little dessert cups were very fun!

Can't wait for tomorrow! Am in awe over how many things they are doing for our children! Great to meet so many families whose children have been through lifelong struggles like Luke. We all wish none of us were going through it but there is something about getting together with others who "get it". Met a family from California who have been through many years like Luke has had... so many uncertainties, so many hard times for their son, but living one day at a time. 

Amazingly all 51 children arrived and no one had to miss this trip due to illness. Many of the families whose children are still struggling were very worried about that (like we were!!). And we were not the only ones with a child in the hospital on Friday for unplanned reasons... so thankful we could all make it. 

A dramatic couple of days before then an awesome start!

Last week was just a crazy week, but then in true Luke fashion there was some unexpected drama. On Thursday night I hooked him up to his IV fluids through a needle into the port in his chest. This needle stays in for 7 days then we change it. Thursday was the 5th day it was in. He has had a port for over 6 years and we have never had anything like what happened. At 11pm I hooking him up, then at 1215am I hear him call, "Mom, Mom! We have an emergency!!" Up I went thinking something was leaking ... but I had no idea. He told me he was wet and I felt his dressing and chest all wet. I thought the port was leaking around the needle (it happened right after this one was placed). I went to change the port needle, but I noticed the plastic piece the needle attaches to the tubing with looked loose under the dressing. I pulled off the dressing and the plastic piece and tubing came off, but the needle didn't. They are all one piece. The needle broke off inside of him. Of course this is another- we have never heard of that happening. We went to the ER at 1am then sat in the ER (up all night) until the AM when he was admitted to Peds. Since we had to get on the place early Sun AM I didn't want to make the 6 hour drive to Pittsburgh Children's for this so we went to one of our local hospitals. The pediatric surgeon came in at 9am and by noon the needle was removed by making a small incision and pulling it out. Now is the wait and see.. he got some antibiotics while in the hospital and now is on oral antibiotics but there is a risk that he now has bacteria in his blood and will get an infection in his blood. That will be really bad- automatic hospitalization. Luke kept telling the doctors he had to get out of there he had a plane to catch.
Friday was supposed to be my free day to pack and get everything ready (also sleep in a bit as I had maybe 12 hours of sleep from Sunday to Fri AM!). This was definitely inconvenient!! We finally got home at around 6 pm. I just went bed after being up in the ER all night. Thankfully my husband and my mom got things taken care of!
Saturday Luke had 2 Miracle League baseball games which took up a lot of the day. We came home and I started to pack... packing marathon! Makayla (our 2 year old as of today) was having a birthday the day after we left for Washington DC so we had her cake Saturday night.

 Poor girl.. born in Pittsburgh 6 hours from home just weeks after Luke's transplant then spent her first birthday in the hospital with Luke because he was hospitalized for 2 months last fall, and now her mom is not home for her 2nd birthday. At least she has lots of stories to tell! Packing was finished by about 11pm.
Luke needed his IVIG infusion which helps give him immunity because his transplant meds make his immunoglobulins drop and make him be able to get sick easy. So that infusion goes about 6 hours. It finally finished VERY late at night then we got up at 415 am for our flight!

(Sorry I can't figure out how to flip these) An early AM departure from our house to Philly (about a 1 hr drive at that hour).

Almost there!

We flew to Detroit (not the most direct way to get to DC) from Philly and then flew into DC. The Delta airline staff at Washington DC was AWESOME!!! They had balloons, all kind of worker cheering for every child getting off the plane, personal escorts to baggage and then to the buses. I cannot tell you how friendly and welcoming they were. Delta donated the flights as well.. how great is that! The pilots we have all met have been great too!

Luke with some of the Delta Pilots at the hotel reception.

Sunday night was a reception for all of the families. Luke began meeting friends and having them sign the photo book of each champion. He was very excited to meet a fellow 11 year old who was his size (short)! He is getting known as the boy who loves to hug here! It is great getting to know all the other families.

Afterwards we went for a swim!

Luke having a great time in the pool.

Today is going great. I will blog tonight.. off to the Air and Space Museum!

What an awesome trip this is.. and it has only begun.

Luke enjoying his new lungs

Spending time on the beach at Ocean City, NJ

Going to the chILD Conference in LaJolla, CA and meeting pro surfer CJ Kanuha through the Mauli Ola Foundation

2012 chILD Conference doctors and children with chILD... this is where our hope started for Luke in 2007!

One of our many stays at the Ronald McDonald House in Pittsburgh.. our home away from home.. not sure what we would do without it!

Siblings: Makayla 23mo (born just 4 weeks after his transplant), Carline (10), Kyara (4), Luke (11), Logan (9), Gregory (10)

Soccer in the yard

Playing Miracle League Baseball

Attending a Pirates Game with his brothers to watch his buddy Andrew McCutchen play. 

A little history on Luke

Welcome to Luke's Blog!
A little history on Luke
Luke had a double lung transplant August 14, 2010. Born 14 weeks early Luke had a fairly typical course for a preemie of that age. He did come home with a little bit of oxygen and required some tube feedings. At 6 months he got Influenza A and was in the hospital but did not need a ventilator and any other major support.  It seemed he was growing out of his premature lung disease and all would be good by the time he was 2 years old. At 1 he was only requiring oxygen at night.. that was a good thing. Then before he was 2 he started getting worse. He started using oxygen all the time again and did not seem like he was following the typical course of premature lung disease. Luke then ended up being treated with steroids for his lungs over the next 2 1/2 years. Unfortunately those created many complications including: a life threatening lung infection that caused him to lose half of his left lung, vertebrae fractures/osteoporosis, diabetes, and began developing cataracts. Luke was now requiring CPAP at night and finally he underwent a lung biopsy. It was found that Luke's lungs never matured and continued to be alike a baby's lungs (so instead of being a complex network of air sacs he had very simple lungs with few overdistended air sacs to exchange oxygen and carbon dioxide). We became very scared that Luke was going to lose his life due to complications or the lung disease. 
We became connected (after much internet searching) with the Childhood Interstitial and Diffuse Lung Disease (chILD) Foundation and attended our first conference in 2007. At this conference with the best chILD physicians in the country we sat and talked with the pathologist who read his lung biopsy. She told us she feared Luke was growing out of his lungs.. as his body grew his lungs had a harder time supporting them. She recommended that we get hooked up with a transplant center that could do a double lung transplant if necessary. His current transplant pulmonologist was at that conference (since he is part of the chILD Research Network) and we were introduced. A month later we traveled 6 hours across the state of PA to be evaluated at Children's Hospital of Pittsburgh (which is also one of the few hospitals across the country that is a diagnostic center for chILD). 
From the time we walked through the doors we knew we were finally where Luke needed to be... after the 2 days of appointments and testing and meeting we finally walked away with hope instead of frustration, fear, and sadness. Though we hoped at that time Luke would not need a double lung transplant about 2 1/2 years later we knew it was time. It was Easter 2010 and we were in Ocean City, NJ .. Luke could not hunt for Easter Eggs with his siblings.. he was on BiPap (a type of breathing machine) over 12 hours a day and he was so tired. The next months things continued to decline.. he was on BiPap 18 hours a day, no longer could attend school, could barely put together Legos, and was no longer living life but just watching it go by. That May he became active on the UNOS transplant listing. August 12, 2012 we traveled home from a routine appt at Children's Hospital Pittsburgh and arrived home at 1130pm. The next day I went to work for a 24 hour shift (I am a Neonatal Nurse Practitioner in the NICU Luke was born in) and at 6:31pm I received a call from his transplant coordinator- there were Lungs for Luke.....
Many emotions went through me during that call but fear that while trying to pursue a much better quality of life for Luke we may lose him (unfortunately we knew a fellow chILD family whose daughter lost her fight just 6 weeks after transplant.. we knew the risk). Luckily Luke's best friend's mom (Alex has Mitochondrial disease and has a lot of the same treatments as Luke) who is a RN in our NICU was also on and totally got all those emotions.. she helped me get out of there to get home and get Luke to Pittsburgh. Luke's volunteer pilot, Joe (from Wings Flights of Hope), picked up Luke at about 8:30pm as Glen (dad) was racing out across the state to get to Pittsburgh before Luke went into the OR). We arrived and Luke was prepped quickly for the OR (the lungs have to be in 6 hours from the time they are taken out of the donor). Daddy made it just in time to see Luke right before he was taken in the OR. We thank God for the family who during the hardest time in their life made a loving decision to donate their child's organs.. it gave Luke life back.
After a few bumps in the road (one side of his diaphragm did not work, blood collecting next to one of his lungs, and his stomach not emptying) we arrived home to a whole new life 7 weeks later. He played in the last Miracle League Baseball game of the season and RAN to first base! We gave back the large liquid oxygen tanks that had been in our home for 10 years.. he was always attached to oxygen tubing.. finally he was free!
This past year has had some new bumps in the road... he now has central apnea (we think his brain was so used to low oxygen and high carbon dioxide that his new lungs worked too well to trigger him to breathe at night... so a little bit of oxygen at night fixes that) and has had multiple episodes where his intestines stop working (5 in the past year). This meant he was on 6 months of TPN (IV nutrition) and currently is weaned off but requiring extra IV fluids every day through a port in his chest. He has been in the hospital 10 out of 12 of the last 12 months.. but things seem better now. He finally went back to school this year (he has not attended school regularly since 1st grade.. he is now in 5th grade)! Though he did get an infection in his port and had to have it removed and then subsequently replaced in July his health has been good. This summer he rode his bike, boogie boarded, swam, and had a fun summer playing outside with his siblings.
Now he takes 18 medications a day, requires every 3 week IV infusion at home (for immunoglobulins), every 3 month infusion (for his weak bones), is on 12 hours of IV hydration a day, and has appointments every 3 months out in Pittsburgh... he is also walking or biking at least a mile a day, going to school, living life... the fact that he is living life is what has made it all worth it.
Our many hospitalizations throughout Luke's life have drove home the importance of Children's Miracle Network. Luke is honored to represent all the children in PA who have had illness or injury that has required care at one of the 5 (in PA) CMN hospitals. He was so excited when he heard he was the PA Champion.. I think in a way it validated all he has been through and said others see how brave and strong you are. 
Today we are in Pittsburgh while he is getting an IV infusion to strengthen his bones. We had the honor of meeting with ACE Hardware employees who have year after year raised lots of money for CMN and the children who benefit from the CMN hospital services. I'm so glad they were able to meet one child that all their efforts have helped. Next time you see a yellow and red balloon at the checkout of the store you are in.. please give. All the money that is raised stays in the local community and benefits those children treated at your local CMN hospital. Thanks to ACE Hardware for all your efforts as well as all the other stores and companies that do the same!
In 2 weeks he will be travelling to Washington DC then onto Orlando to represent PA and CMN. We are very excited to be a part of this.

Luke's Story

Luke
Age 11
Children's Hospital of Pittsburgh of UPMC
Double-Lung Transplant

Luke was so anxious to begin life that he arrived 14 weeks early. He continues to do things in a non-traditional way, including attending a Pittsburgh Pirates game wearing a surgical mask and carrying his favorite blue blanket.

Luke loves baseball and after a double lung transplant in August 2010, to overcome interstitial lung disease, he’s now able to play his favorite sport. At 10 years old Luke was able to experience the life he sought. He can exercise on a treadmill and even run to first base on his baseball team for kids with special needs—and without an oxygen tank.

Luke knows his quality of life didn’t come without cost. Realizing his new lungs came from another child he told his mom, “I hope the surgeons left a little piece of lung in the child they took them from, so he could breathe in heaven.”

Children's Miracle Network Hospitals Champions

Champions is a Children's Miracle Network Hospitals program that brings attention to the important work being done at its 170 children’s hospitals. It does this by honoring 54 remarkable kids who have faced severe medical challenges, and helping them tell their stories.

The Champions program designates a child in every state who has bravely battled a serious injury or illness. The Champions represent the 17 million children treated at Children’s Miracle Network Hospitals every year. The 2012 Champions have dealt with a wide variety of injuries and illnesses including genetic diseases, organ transplants and traumas, as well as various types of cancer.

The Champions travel for a week in September, first to Washington, D.C., where they traditionally meet with their state representatives on Capitol Hill and visit the White House. They then take a private chartered flight, provided by Delta Air Lines, to Orlando, Fla. While there, Champions meet Children’s Miracle Network Hospitals corporate partners, hospital representatives and media partners. These groups  convene to celebrate a year of medical miracles during the Children’s Miracle Network Hospitals Celebration event at Walt Disney World Resort.