What I want for my birthday- by Luke

What I want for my birthday is to give the kids a birthday present at  Children's Hospital of Pittsburgh. And child life has a special birthday closet for every child who has a birthday that is in the hospital. I have never been in the hospital for my birthday. If I was in the hospital for my birthday I would feel sad. If I was in the hospital for my birthday I would like a party and a special present.


One of Luke's biggest worries is that he will be in the hospital for his birthday or Christmas. This is something he worries even more about when those dates approach. In honor of this major milestone (Luke becoming a teenager) and his 4 year lung-aversary in August Luke wants to collect toys for Child Life to be able to give to other children in the hospital for their birthday. We will be headed out to Pittsburgh for a week of appointments the forth week of September. At this time Luke wants to take out all the gifts he can collect and give them to all his friends in the Child Life Department so when a child in the hospital has a birthday they can get a special present.
Luke will be collecting new toys for ages 0-21 years old. Also new pajamas are a fun way to celebrate your birthday in the hospital, so if someone would like to donate them instead that would be great too! We can pick up any gifts or they can be sent to our house (through amazon, Kohls, or another store). Also if someone wants to order online and do it Site->Store then we can pick them up at the store (ie Walmart, Target, Kohls, Toys R Us).  Any questions email me at igohaiti@rcn.com or message me on his Facebook page (Love+Lungs=Life for Luke). 

Getting away at the beach

 July 2014 

A friend of a friend heard about Luke and provided us a wonderful opportunity. The most amazing thing was that is was for the whole family- when you have a large family like ours it is very rare to have an all of the family opportunity like this. While Luke was in the PICU it was one of the things that kept his spirits up and gave him motivation to do his PT so he could get stronger. I reminded him he was going to go to batting practice and see McCutchen. Luke was so excited to introduce his siblings to McCutchen. He was so worried he was going to be in the hospital and miss it.

 We all drove out to Pittsburgh (for once not for medical care) and anticipated Luke seeing his "buddy McCutchen". When we arrived we found out the bad news... the Pirates would not be taking batting practice outside. They had a bad game the night before so I am guessing that was part of it. Luke was crushed. He cried and said he didn't want to go see the dug out if McCutchen wasn't going to be there. We talked about how this was neat for his siblings too so we would go and see the dugout anyway.

 My heart broke for him. He sat in the dugout hoping McCutchen for some reason would show up. I felt horrible because I kept telling him in the hospital he was going to see McCutchen, that even if he was in the hospital we would get a pass to go. I kept saying there was no way we would miss it... and he didn't get it. My heart hurt for him so much.

 It ended up being a very exciting game. It was much hotter than we expected (and we were in the sun) so I was really worried about him not getting enough fluid. McCutchen had a great game. Luke celebrated wildly everytime they scored, everytime McCutchen hit, and he stole a base! This is Luke at the end of the game.. elated that his team and especially his buddy McCutchen won the game!
We are really thankful for a wonderful opportunity from a very generous person. Someday Luke will see McCutchen again.. it just wasn't July 4.

We decided to make every minute count for this weekend as a family. Especially coming off of a serious hospitalization, these moments mean even more. We headed back across the state the next day and decide to go to Johnstown. We stopped at the Museum there which was a great experience. They had a whole immigration part of the museum the older kids really enjoyed and I just love when we can combine educational stuff with fun!

 The kids floor had lots of fun. 

 Then we went to the National Landmark of the Johnstown Flood. We got pizza and hiked the short downhill hike to where the bottom of the former dam that broke and caused the deadly flood was.

 We hiked to the look out on both sides of the valley to see where the water flowed.

 I'm so glad we took that weekend for a family weekend. Even though it didn't end up being how we expected, we were able to make some great family memories and have lots of fun together.

Two weeks ago all the kids and I headed to the beach with my mom.

 Getting his IVIG infusion one day. 

 Ocean City is known for its street flooding on days with lots of rain during high tide. We seem to be there every year when it happens. Kyara is saving the neighbors animals (fake statues). Logan had an interesting rain hat and pulled Makayla on the boogie board. (He is standing on the sidewalk here). Gregory and I ended up pushing some poor (OK she was in a new Mercedes) woman's car (which was in about 3 feet of water) 3 blocks. Wow was I sore the next day!!

 Evenings at the beach.

 My children just love the beach. They always have so much fun. We decided to walk down one evening and they had a lot of fun.

 

 Luke headed in the ocean each day we went. The water was really cold for July.

Ocean City, NJ has great summer programs which are less expensive than the day camps around here and are all very close in proximity. And of course there is the added bonus they are at the beach! It has always been very challenging to have Luke go to camps- even day camps. If he is on IV fluids he hasn't been able to go, his medication schedule makes it challenging, and it has always been challenging to have him do anything without a nurse or myself with him. This year we decided he would try Theater Camp. Carline wanted to go too, so I felt better about her being there as well. I had to change his medication schedule a bit and we made it work. I was a little worried coming off the last hospitalization (he is still regaining his strength). He had a fantastic time and was so happy to be a "regular" kid. He made a friend while he was there which was also very special.
The end of the two week day camp was a show Friday evening. Luke did so great in the show. He had some speaking parts and lots of singing and dancing as a large group. In the dress rehearsal he missed his cue for his line and was crushed... he had to be coaxed out of the bathroom. But for the final show he did great... even threw in a few waves to me from the stage! It is always such a huge thing seeing him do things that "regular" kids do, things that are no big deal or even challenging for them mean that for Luke it is so much harder.

 

The other amazing thing is their library programs! Our children love the library in Ocean City, NJ. This evening the Cape May Co Zoo came and did a program. Makayla checked out the dental work and Kyara wants a pet so bad she will even snuggle up with a pelt!! Poor kid. 

 All the kids with their sandcastle creation.

 Just something about reading a book on the beach. Being at the shore also helps Luke be more active. We walk most places or ride bikes. There is usually a breeze so it isn't as hot (Luke has trouble with the heat). Luke is still struggling getting his strength back. I am still so glad he was doing his Boy Scout Merit Badge for Personal Fitness as I know he went into this last hospitalization stronger so he weathered all the complications better than if he had not done it.

 For 10 days we are doing out second year of Fresh Air Fund. We have the same 12 year old girl back and also a 12 year old boy. We had a great time spending the weekend at the beach and have a lot of activities with the Fresh Air Fund Lehigh Valley group planned- bowling, blueberry picking, hiking, drive in movie, lots of swimming and playing in the backyard! I encourage anyone in the Northeast to participate (www.freshair.org).

 Playing games, miniature golf, and walking on the boardwalk.

This month we had a great loss. Glen received his hearing dog, JB, in the summer of 2001. We were married less than a year, we had no children, and we were young. JB was an amazing dog and the best hearing dog anyone could want. She was a stray found outside the training facility in Oregon. At Glen's former job she went to work with him everyday as well as on business trips. She was a great help in being an extra set of ears alerting Glen to many sounds (smoke detectors, oven timer, me calling his name, someone knocking at the door, etc). She witnessed first hand 7 children become ours over many years, with the first being Luke just a few months after JB first came home. Sadly JB at 98 dog years (14+ human years) had a body that wouldn't keep up with her mind. Still young at heart her body was failing her, her vision almost lost, her hearing very impaired, and her mind not as sharp as it was. The kids all miss JB a great deal, but no one is affected more by this loss than Glen. A service dog and their owner have a bond that surmounts the pet/owner bond.
It was hard telling the children (we were at the shore when she died). Luke cried and took it really hard. I thought Kyara would have a very hard time but when I told her she looked at me and said, "Mommy it is OK, I told JB that when she died I would get another pet to replace her." Ohh poor JB.. hoping her mind wasn't working well when she had to hear that!

 This is a very early picture of JB and Luke.

Luke's prograf (main transplant medication) levels are once again dropping. So we keep upping his dose and we still aren't where we want to be. Usually this means his intestines are not functioning well or his J tube has flipped back into his stomach. But for the next two weeks we are going to not temp trouble and get through July with no hospitalization. We are due back in Pittsburgh August 4 for an impedance probe. This is Luke's most hated test. It is when they put a tube down his nose and into his esophagus and let it sit there 23 hours to record what reflux he has. Because of the vomiting last hospitalization and the reflux symptoms he is having it is very important to figure out if he needs a third fundoplication (suregery to prevent reflux). When he needed his second fundoplication he had over 200 episodes of reflux in 24 hours. A third fundoplication is technically hard and will carry risk with it, but without it he could do permanent damage to his lungs if he is refluxing.

Luke's 13th birthday is coming up. There were many who told us he wouldn't make it to his teen years. This is a big milestone for Luke. All he wants is to be out of the hospital.
Please pray for Luke that his health continues to be good through the rest of July. Please pray his strength continues to get better each day and that the testing we do in August gives us a clear picture of what to do next.

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.