Liverversary

I can't believe I haven't posted since the transplant! On May 13, 2014 at 8:30 PM, as I was making t-shirts for the annual CF Great Strides Walk and Seamus was taking a bath, we got the call.

"Julie, we think we have a liver for Seamus. Can you get to Philadelphia right now?"

Those words changed our life forever. We all jumped in the car and took off, leaving half of our pre-packed luggage behind. The 3 hour ride to Philadelphia was the longest trip of my life.

They had told us another child waiting for a transplant was also called and once they examined the liver, they would determine whether Seamus or the other child was the best match. I know many people waiting for organs go through many "dry-runs" before actually having their transplant so I was trying to not get too excited, but it was nearly impossible. At 4:30 AM, my cell rang and I heard "It's a go!"

Within an hour, Seamus was wheeled away into the OR with a smile on his face and our family went to the waiting room for a very long wait. Through the 8 hour period, we got many updates that things were going  well and finally the surgeon came out to tell us it was done. She said they were surprised at how awful his old liver looked because he always seemed in good spirits and didn't complain. I told her we've been hearing that from doctors his whole life. She said he was very lucky to get the new liver when he did.

His recovery went well, with a few bumps along the way, mainly with his GI system getting used to the new liver but he quickly adjusted and after two weeks in the hospital, we went to stay at the Gift of Life House for another week to be close for follow-up appointments. On June 3rd, 2014, we headed home.

This past year has been great. Seamus' liver has been healthy and he is back to being an active kid. He's gained more than 13 pounds and has gotten 3 inches taller. He hardly missed any school this year and he made the Honor Roll all semesters.

On his first year liverversary, I wrote the letter below to his donor's family thanking them for this wonderful gift. The Gift of Life House will send it to them and I'm hoping to hear back.

Dear Donor Family-

I am the mother of a wonderful nine year old boy who is alive today because of the precious gift that he received from your loved one. I will never be able to express my gratitude and thankfulness enough to your family for such a selfless act in your time of grief. I think about your loved one and your family every day and I am so sorry for your loss.

My son, Seamus, received his new liver after waiting ten months on the transplant list. His health had continued to decline until he was very sick and unable to attend school full-time. He wasn’t able to play with his little brother or walk very far without the aid of a wheel chair because he was so exhausted and in pain.

Originally, it was planned that I would donate part of my liver to him but because of an anatomical complication, I was unable to be the donor. This was a huge disappointment for our family. After that, he would ask me every day if that would be the day he would get “the call” and as time went on, we were all getting discouraged and were afraid he wouldn’t get it in time.

I am so happy to say that now he is an active little boy who runs around and loves to ride his bike and scooter.  He takes karate class and is back in school full-time in the 4^th grade. His liver is functioning extremely well and the doctors couldn’t be happier with his progress.

Seamus plans on being a pediatric anesthesiologist when he grows up and I know he will accomplish his dream. That wouldn’t be possible without the enormous gift he received last May. I do not have the words to fully convey how much it means to my husband and me to see him have that chance.

If you would like to contact our family and find out more about Seamus, we would love to talk with you. I know it may be difficult for you right now, so if you are not comfortable yet, I understand. Whenever you are able, feel free to contact us.

With sincere gratitude-

Julie

Update

So let's get it out of the way... After realizing on-line Weight Watchers just wasn't going to cut it for me, I joined Jenny Craig. My life is so crazy right now, I really need something very structured so I don't have to make any more decisions than I already do. After one week, I lost 3.6 pounds. I had lost a few before so total loss is 7.3. Current BMI - 33.7.

Mackey had his second birthday a few weeks ago. The poor guy really gets the short end of the stick. It was a low key event at our house but he had a big celebration at daycare. He was thrilled to get presents so I don't think he minded not having a party. I will write a post strictly about Mackey soon. He is growing up so fast and I want to make sure I record some of the wonderful things he does before I forget.

Some of Seamus' symptoms seem to be changing so we spent 7 hours at CF and GI clinic on Friday and got x-rays and an ultrasound done. The concern was he might be developing ascites which is fluid build-up in the abdomen because the pressure has increased so much in the liver. The doc called us Sunday night, which is usually not a good thing, to tell us there was no sign of fluid but he has lots of trapped gas and they can't figure out why. He had some stool but isn't obstructed. He constantly looks like an 8th month pregnant woman. We also got definitive proof of the cirrhosis which up to this point they had assumed but hadn't proven. This doctor has only been following Seamus for about a year and I think he's finally starting to understand the uniqueness of the situation. He admitted that Seamus is "a mystery" and his liver (and GI) disease is not following the path of most CF patients. We had another long discussion about transplant on Friday and he still believes Seamus isn't ready but we are concerned about waiting too long because he could become too sick to be eligible.

The best part of the weekend was meeting with the Make-A-Wish volunteers. They had lots of questions for Seamus about his likes and interests and really listened to his request. He has a very specific request so we are hoping they are able to do it. He makes to go to the Activision offices where they make the Skylanders video game and create his own character called Man-atee. It's half man, half manatee. The face will be his face. He's come up with all the powers he has and whole story line. So hopefully, he could actually work with the designers to create it and incorporate it into the game, at least a version just for hem. My biggest concern is they wouldn't fully understand what he wanted and would just send us out to meet with the designers who would give us a tour and just show him how they work. I think he would be very upset if we went all the way there but he couldn't make Man-atee but it may be too much work for them.

He has a second wish, just in case, which is going to the Disney resort in Hawaii. Obviously, James and I wouldn't mind if that wish was granted but he really has his heart set on the first one so I hope they can do it or at least some comparable version of it.

So we're still waiting for culture results and more liver blood work to come back but currently Seamus is feeling good which is the most we can ask for. I'm hoping we get that huge snowstorm everyone is talking about so we can all stay home together and snuggle.