Day 8-gratitude

We could not be more humbled by the number of people who are supporting us. Family, friends, colleagues, fellow heart families etc. It makes us truly feel like we are not walking this journey alone. Thank you to each of you who loves and cares for Lucas and our family. Lucas has gotten so much: presents, balloons, cards, memos, face time from special people, visits from a lot of wonderful people, time with a lot of family and friends. He feels the love, we can tell. And it certainly helps lift his spirit and strengthen his healing!

We are getting a bit (ok, a lot) of hospitalitis. We want to go home !!!! We so want to return to our jobs and our lives as we know it.  I know it is weird, but I really want to sweep and scrub my kitchen floors and dust.. ha, it is the little things. I know Peter is missing his work, but he is trying to keep up on it from afar. It is amazing the day to day things you miss when you are deprived of them.  Hopefully, it will be sooner than later, but for now we just wait for those chest tubes.

Lucas still has drainage from both of his chest tubes. When I asked the team this morning how long they think it may be until we pull the chest tubes they said it could be a day or two up to a few weeks. Goodness. It is really difficult, because Lucas is wanting to return to playing normal, but his body isn't quite ready yet. All of his grandparents are here this weekend, which of course he is eating up. He is requesting to walk everywhere we go. He walked all the way from the play room to his bed pulling his wagon of tubes. He is amazing!

We were warned from several people about the fontan hospitalization. Our surgeon directly told us "it is frustrating because he will be ready to go, feeling great, eating wonderfully, but he will have to stay because of the chest tubes." And that is certainly the case right now.

But, it is in times like these that you have to step back and look and be thankful for everything we have. Our son just went through major open heart surgery a week ago and now wants to push and pull wagons around the hospital. We have a daughter who is an AMAZING trooper through all of this. And, we have amazing support! As easy as it is to get down, we have to remember how incredibly lucky we truly are!

Claire has been such a little angel. She has been 100% off schedule and adapting to change every day depending on what Lucas has going on. We feel incredibly guilty for trying to have her here with us, so my parents (thank goodness for them) are going to take her for the remainder of the time. She just can't stretch her legs enough around here. We really went back and forth as to what to do because she has an incredible ability to make her brother happy. He just laughs at her. But, she will be much happier with grandma and papa for a little bit until we get home. She has been a genuine trooper. We will miss her sweet smile like crazy. But hopefully it is just for a very small amount of time.

Thank you you to all of our family and friends for the love, support, prayers, positive thoughts, sweet treats, gifts, meals, time, etc, etc, etc. We couldn't be more thankful!