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.