Beating the Odd... 5 yr 50%

In the lung transplant world the average statistic quoted for survival is at 5 years, 50% of lung transplant recipient are alive.  There have only been 194 lung transplants done on 6-12 year olds (the age group Luke was in) and in 2010 hr was one of 9 in that age group to have a double lung transplant. Thought Luke was 9 he needed a 6 year olds lungs as his lungs never really allowed his body to grow. So when you are the parent of a 9 year old (and his first transplant eval was at 6 years old) there really are no experts with big numbers (when in 27 years only 194 are done in 6-12 year olds). The most important thing for us was that we has that gut feeling it was the right place, we felt we were a part of a team, and where we went was willing to care for a child with many unknowns and who was deemed , "too high risk to hurt their survival numbers" by another institution. Ever since July 2007 we have known Childrens Hospital Pittsburgh is that place. Pittsburgh is the perfect place for Luke. He is alive because of the incredible team there. I think every single employer there has in some way touched Lukes care and we are thankful for each one of them.

These guys have a special place in our hearts! Geoff Kurland (on the left) is a part of the original group of Childhood Interstitial and Diffuse Lung Disease Childrens Research Network doctors. It was at one of the chILD conferences we were introduced and a month and a half later traveled across the state to Lukes transplant eval just before his 6th birthday. In the middle in Jonathan Spahr who is the one who walked into the CICU waiting room at 8 am on August 14th after checking in the OR Luke was in and reported all was well and we would be able to see him soon. Seeing him walk through the waiting room doors was so comforting. These two guys have been a major part of why Luke is here. Luke has forced them to become not only experts in the unknown lung disease but also in the unknown intestinal issues. 

Pictures of how many different departments impact Luke everday.

 Nutrition/Caff

Housekeeping

School program

Volunteers

Sib Center/Child Life

Nursing

Music Therapy

Art Therapy

PCTs

Drs in training

(Residents, fellows, med students)

There are many others... Resp therapists, those who work in the lab/engineering/registration/coordinators of care/social work/publuc relations/Childrens Miracle Network office/OR/Anesthesia/specialist doctors/Infusion Center/Radiology/CICU/CT surgery/ many more Im sure Im forgetting.

Every single one at Childrens Hospital Pittsburgh has played a part in Lukes life.

Of course there are thise that we could not have made it without... His transplant surgeon and the CICU team during the first critical days after transplant. His transplant team since 2007. Special PCTs on his floor who make him laugh, are the butt of his practical jokes, and even buy him illegal oreo cookie ice cream pops which heal his belly!  And some very special nurses on 7A, now C and all over CHP. From the nurses who had to advocate (step on some toes) to do what was right for Luke, to the nurse who had a heart transplant and could relate to Luke in a special way, to those special nurses who were there holding his hand during the most horrible moments, to the nurse who kept him throwing his IV pole out the window, to those who made him laugh, to those who kept me sane, to those who have his 25+ med list memorized complete with times (Ok sadly there are too many of you), to those who have brought special presents just when he needed it.... And of course his beloved Anna. 

Pittsburgh is and has always been the perfect place for Luke and our family.

To Luke's donot family... We can never thank you enough for giving Luke life. There are no words, cards, gifts that coyld ever express our gratitude. There are no words for our sorrow over your loss. Your decision in the hardest moment of your lufe gave Luke life and most importabtly gave him the ability to enjoy life.

Lukes nurses at home who have a unique window into our private lives for the past 13 years. Our families who have road the roller coaster with us.. thank you. Glen who jumped into this life with both feet and has become an expert at IVs, feeding tubes, medications, oxygen, vital signs... You are amazing and I am blessed to have you. Our other children.... I know it is so tough having a brother with serious medical needs but you all shine in your own right and I pray growing up with Luke allows you to bless others with a compassion  that is unique.

Everyone who has followed Lukes story, prayed, send gifts, contributed to his medical fund, brought meals, and liked his Photos of the Day you all are special and a part of Lukes journey. 

Yesterday, Glen and I realized we were a bit lost without Luke. For the past 14 years our life has been arranged around his medical care/nurses/medical needs. Our minds immediately go to when the next med is due (6a-8a-10a-12p-3p-8p-9p-10p-11p-12a). The absence of the hum of the oxygen concentrator caused a eerie silence the past couple of days. No nurses in our house when we were home for days was odd. Not having that structure was so abnormal.... So not us... After 14 years so odd. 

This life with Luke is our life.. it is our normal. How do we do it.. one day at a time.. sometime we dont do it well... But we do it just like any other parent who has a medically fragile child does it... One day (sometimes minutes) at a time. 

As I was writing this, I received this video. This weekend at camp I am sure will be life changing for Luke. He has never been away from us before (except for school which he always attended with his home nurses) for more thab 3 hrs (and that has only been in the past year on very special occasions with us close by). What is a normal right of passage for most kids is like climbing Mount Everest for Luke... This was huge!

A huge thanks to Camp Chihopi (Specifically Bev) who invited Luke to camp this week. Camp Chihopi is for kids who have had liver and bowel transplants. Due to the small number of lung transplant patients (and that many of them have CF so there is infection risk with groups) there are no individual camps for them. Lung transplant kids are rare. Luke having the extra medical issues (requiring daily IV fluids, daily IV medication, a lot of medicines, as well as still needing night oxygen, etc) adds an unique twist to finding a place that Luke could even attempt this. Honestly I likely would have never agreed if there werent CHP doctors, nurses, and his beloved Child Life staff all running the camp. You all have given Luke the opportunity of his lifetime and changed his life for sure. One thing Luke always longs to be is "just a regular kid."

some ups, some downs

It has been a while since I posted. as I have mentioned the transition back home after a long hospitalization is a stressful time. not just for Luke who adjusts to being back home and that routine, but for everyone as roles readjust.
We have had all kinds of germs attacking our house.. two GI viruses and two respiratory viruses. Not everyone got each of them but I especially was knocked down by one of each.
In April Luke came out for regular appointments. He had a cough for a couple of weeks and generally wasnt doing great. His PFTs dropped by 50%. There was concern he was showing signs of rejection. Two weeks of antibiotics were prescribed. We came back two weeks ago for repeat PFTs and a bronchoscopy. Thankfully his PFTs were back up to his normal and his bronch looked good. So incredibly thankful for that!
On Monday afternoon Luke developed a high fever. His pilot, Joe, from Wings Flights of Hope got us out to Pittsburgh very quickly. I was so sure he had bacteria in his blood. We have been here two and a half days and no bacteria has grown from his blood cultures so we are headed home.
We had plans to spend two nights in Chincoteague Island, VA this week as a family get away. It is something that has been on my bucket list. Since I found a great deal on Groupon, we were unavle to cancel since Luke got sick less than 72 hrs before the trip. Glen ended up taking the kids yesterday evening because everyone needed get away time. We are very thankful that Lukes pilot Joe will be able to get us home today abd Luke, my mom and I will drive down once we get home.
This is our shortest stay ever, but so thankful for all the amazing nurses we love so much cared for Luke. He had some of his favorite dogs visit and was able to go to the annual hospital Prom last night.
some pictures to catch you up to today:

In March we adopted three cats from the shelter. This Is Luke meeting his cat King Tut.

We got away for a night to Great Wolf Lodge in March for a well needed family time.

King Tut has been an amazing cat for Luke. Snuggling at night...

A quick ER stay in March when Lukes GJ tube broke and had to be replaced.

schoolwork... It has had its ups and downs.. King Tut also supervises Luke during schooltime.

A service project with Boy Scouts

Bowling with scouts after earning merit badges and his scout rank.

Luke was asked to be part of a Donate Life celebration for Organ Donation Month. He raised the Donate Life flag at St Lukes Hospital (where he was born).

Easter Sunday

After the egg hunt

Out to Pittsburgh in April.

This set of PFTs was concerning 

Lukes amazing transplant pulmonologists.

Pre prom pictures with his special friend Devon

finally had his first overnight tent camp out with his Boy Scout troop.

Miracle League baseball started up

successfully set up his tent

All packed for one night (with 3x as much as Logan)

Logan and Luke practicing their tent skills.

Back out to Pittsburgh two weeks ago

Puzza and Guardians of the Galaxy after his bronchoscopy.

Monday night.. high fever, retching, rigors, feeling horrible

Pilot Joe to the rescue... Wisked us out to Pitt

Lukes special doggie friend, Ike

Making crafts at the prom

wiped out from tue prom!

Happy to have grown enough to try out Gregorys bike last week.

Grandpa helping him with baseball skills last week.

Video games with his friend, David (a volunteer at the hospital)

Back home after 100 days in Pittsburgh

We arrived back home very late Wednesday night/Early Thursday am At 2:30 am. We were concerned about the snow on Thursday and all looked good for Luke to come home. I forgot we had arrived in Pittsburgh the Day before he was admitted so we actually spent 100 days in Pittsburgh.
Tuesday Gregory saw his orthopedic doctor and got a good report. The bone is healing and he can begin. With light jogging and kicking. He was thrilled.

Then Carline had her 24 hr ERG to follow up from her seizure in December.


The entire day Wednesday was spent packing up our three months of living there and cleaning the apartment.
it will be hard for Luke to adjust to being back home. He had his routine at Children's for 3 months.

 the dog visits (Luke loves Ike who has been visiting since his transplant)

The escape to Target

Hospital school fun

Pizza parties with the nurses when he could finally eat

Friends (this is Charles from housekeeping.. He checked on Luke everyday. There are many special friends at Children's just like Charles who are all so special to Luke.

 Luke will miss Anna.. she is a special friend to Luke. Anna has taken care of Luke since about 6 Months after his transplant. He got her this Spiderman scrub top because he was not impressed with her flower prints!

So many of the nurses are so incredibly special to Luke and to our family. They have celebrated our good times and held our hands through the bad. I don't know how Luke would have made it through without his nurses. I wish I had pictures of them all with you ... Whether he was harassing them with remote control rodents/snakes/spiders, calling out for "emergencies" which translated to his DS falling on the floor, or in those hard times of the bad belly or other times of need. I can't imagine going home weekly to work if it wasn't for each of Luke's nurses. To trust your child under someone's else's care is so hard, especially with a child who has complex medical needs. But their care of Luke and my trust that they would advocate for him, expertly care for him, and love him is what got me through those times I was away.

Once we were at Ronald McDonald House it was real we were going home. I am not sure how we would have gotten through the three months without Ronald McDonald House. We rotated kids who were there at different times, but having his siblings around helped Luke a lot. He doesn't feel as lonely with them around. The free meals made by families and groups that come in to volunteer were a welcome break from hospital food and helped financially a lot. The staff there really helped us feel like we were at home. We miss those that no longer work there but have gotten to know new employees who have become our friends. And seeing those who have been there since we started staying at RMH is like seeing family.

It is hard to get his endurance back after being in the hospital so long.

Many of the kids did schoolwork like this over the past 3 months.

The staff made Luke a goodbye poster. Here he is the morning we left reading all his messages again.

Sometimes we had to get creative not having everything from home with us.

 Good old Ronald.

The van was packed to the gills! There was 10000 miles put on the van since the fall.

Luke was charged to document Flat Stanley's adventures by a friend names Leo In Wisconsin. Flat Stanley arrived just in time to see Children's.

 it is nice to be home. Caroline and I started a devotional together. Kyara joined in.

 My birthday card from Luke. He got it out of the drawer of cards himself and was so happy to give it to me.

hey 4/7 Of the kids looking isn't too bad right?!?!

best birthday gift.. all the family together. And Luke being home and able to eat birthday cake with us.

Glen and I went on a Valentine's Day date to Wegmans.

Then came home, made fondue and watched a movie. From November to the Day we got home it was rare we spent more than 2 awake hours together (only a couple of times that happened).

So the first couple of days went well. Luke was eating about twice a day. Then Saturday and Sunday were hard. Sunday he was up at 5 am with a bad belly. It is so tough on him.

We continue to figure out his best schedule at home of IV fluids over 16 hours, IV medication twice a day, medicines almost every 2 hours and his other medical stuff. Insurance has not approved our nursing hours. Thankfully today a nurse was sent out as I am working. But now I work a 24 hr shift today and Glen is home switching out IV fluids, giving IV medications, doing all his meds and caring for the other children (add in a ballet class too). Gowns job is in IT... Caring for IV medications through a central line is not second nature to him.

we will have no nursing tomorrow. Which means I will work a 24 hr shift then not be able to sleep. And I have to work another 24 hr shift on Wednesday. If our insurance approval does not come in time to send a nurse out Glen or I will have to call out of work. This is a real issue and ridiculous. How could he not qualify for nursing especially when we are both simultaneously at work. Craziness. Just like our supply company that said we would have his formula by the Day of discharge and it arrived two days later. This is the most incredibly frustrating part of having a medically fragile child. It is a whole mother full time job making phone calls, filling out papers, paying bills,etc. I don't mind the direct care of Luke at all.. it can cut into sleep, make a busy day, cause unique challenges but we do it all for Luke with love. The secretarial stuff.. not so much love flowing there.

 A special little buddy came to welcome Luke home.

Luke's labs today we're a bit off. His blood pressure has been too high about half the time since we are home. The belly continues to be on a roller coaster of working and not working. Emails a have been sent. We hope to get Luke in a better place over the course of the week. One big praise is his kidney function labs were excellent. I'm so happy about that! 

Keep praying for us as a family as we reconnect. Lots of changes for all now that we are all home. It is hard on everyone. It seems being home would be good all around, but honestly the transition is a stress. Besides for the past three months we were surviving through each at. Lots of stress all around. Now our guard can be let down a bit and that brings some of that bottled up stress flowing out.

Glen and I are hoping to get away for a nught and we have a special one night family activity planned in March.  One day at a time. 

Pray for the insurance to approve Luke's nursing hours so we can work and sleep. Please pray that Luke does not get a line infection and his belly behaves. Pray his electrolytes improve and his blood pressure normalized. Pray those kidneys keep doing well. Pray for all of our strength during this time.