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.