Welcome to Luke's new blog site

Welcome to those who are new to Luke's story as well as to those who have followed us over here from Luke's COTA site. I will pick up where we left off from Luke's COTA site.
For those who are new to Luke's story here is a VERY brief history of Luke's Journey. July 29, 2001 Luke was born almost 4 months early and came home from the NICU at 3 months of age as a pretty typical child who was born that early. He was on a little bit of oxygen and needed some feeding tube support

Luke's first photo at about 2 weeks of age.

At about 6 months of age Luke got Influenza A (we were one of those people who said we never got flu so we didn't get flu shots, well we got flu, and we passed it onto Luke). He was hospitalized but not outrageously ill from it. At 12 months he seemed to progress as preemies like him would and he was only on oxygen for sleeping.

Then at 2 we noticed he was getting sicker. He started needing his oxygen all the time again.

Still able to take breaks off his oxygen to play free from the 6 foot leash.

Luke was placed on high dose steroids (which was thought to help his lungs) and he continued to slowly get sicker. At the age of 4 we saw first hand what those steroids were doing to his body... he was so immune suppressed from them he got a life threatening infection that destroyed the lower third of his left lung and it had to be removed, he hadn't grown for years, ended up fracturing 8 of his vertebrae, eventually developed diabetes, and adrenal insufficiency (to name a few of the side effects).

This is Luke with his same age peers- he is the little one with the oxygen tank.

You can see the "steroid puff" here

At this point we knew we had to get a better idea of what was happening with his lungs. It was quite a fight to get an open lung biopsy but it was finally done... and devastating to know that the steroids (high dose from age 2-5) did NOTHING for his lungs.. he did not have a problem that steroids could help. 

Luke at Miracle League baseball

We connected with the Childhood Interstitial Lung Disease Foundation. After talking to the "grandfather of chILD" on the phone we were told to get Luke off the steroids ASAP, try some less harmful treatments (IVIG/Zithromax), and be evaluated by a chILD center as it looked like Luke would be one of the children who may need a double lung transplant. 

Luke ended up on a breathing machine at night.

His treatments increased

Though he was able to go to Kindergarten.

We went to our first chILD conference in 2007. There I was able to sit down with the best pediatric lung pathologist in the world and ask her about the reading she did on Luke's lungs. She too told me Luke would grow out of his lungs and needed to be seen at a transplant center. We knew St Louis and Texas did the most pediatric transplants but to relocate our whole family for months-years was overwhelming.

This was the size of our family at that time (well the littlest one I was still pregnant with)

The pathologist introduced me to Geoff Kurland at that conference. One of the original 5 or so doctors on the original chILD Research Network. That introduction led to traveling across the state of PA (approx 300 miles) in July 2007. Children's Hospital Pittsburgh has an incredible reputation for all pediatric transplants so we were very comfortable with this- we could also wait at home and not need to relocate the whole family. That day in July when we walked into Children's Hospital Pittsburgh once again we had HOPE for Luke. The previous years I felt like I was constantly fighting, in a battle, to have people treating Luke listen to me that something was seriously wrong. No one knew what was wrong with his lungs and unfortunately the hospital he was going to was content to sit back and watch. But he was having more and more complications and getting sicker so I knew this was not what was best for Luke. 

We knew Children's Pittsburgh was going to help Luke soar in life!

Luke ended up on BiPap 18 hours each day.

He was unable to play with his siblings and had to watch life go by.

Luke was listed with UNOS for a double lung transplant. Easter 2010 we knew it was time, Luke needed a double lung transplant. 

Thursday August 12, 2010 we headed back from routine appointments in Pittsburgh. We continued to wait for the call. Friday August 13, 2010 at 6:31pm I was at work when my cell phone rang with a 412 area code... it was the call. I can't describe the cascade of emotions that hits when you get the call.. you are so overjoyed your child has a chance at life, you are terrified because this is the ultimate risk, you are incredibly sad that you know another family is having the worst day of their lives, and you are numb all while having all of those feelings. 

Wings Flights of Hope came and picked up Luke at the local airport to get him to Pittsburgh in time for his double lung transplant. Wings is an incredible organization that flies patients for free and is one of the rare volunteer organizations that will be on call for transplant flights. This is Luke and his pilot Joe.

I was 34 weeks pregnant, we wondered all summer which would come first... Luke's new baby sister or his new lungs!

Luke right after transplant.

Count up all the pumps.. he was on at least 17 IV drip medications.

His first walk with his new lungs.

Rehab began.. Luke and his favorite PT Matt down in the gym.

He got to see his old lungs (in back compared to healthy lung close)

After 2 complications returning him to the OR and a almost 4 week stay Luke got out of the hospital, even beating the baby's arrival.

Luke walked out of the hospital without oxygen for the first time in his life.

Just 3 days later his little sister arrived

While staying in Pittsburgh for the month of rehab and monitoring he met his favorite baseball players.

 And he even went to see one of their games. 

October 2, 2010 Luke arrived home to experience life not attached to oxygen tubing

He even returned to Miracle League Baseball for the last game of the season. He would wear that mask in public for the next 8 months (until flu season was over).

Fast forward to today. Luke is about to turn 13 years old and in August will be 4 years post transplant. It has been a up and down roller coaster ride and we always fear chronic rejection (which essentially occurs in all double lung transplant patients and is why there is a 5 year 50% survival rate).  This blog will chronicle the struggles Luke faces, but most importantly how he is living with his new lungs.