DISCHARGED!!!! Sorry for the delay in post, but yesterday was a whirlwind. We have the best news to share, and that is that Nolan was discharged from the hospital yesterday afternoon!!!! His chest X-ray continued to look great with the tube clamped, so yesterday afternoon, they pulled his chest tube out, and we were discharged a couple of hours later!

Nolan was SO excited to get out of the hospital! He got dressed and into his stroller over an hour before we were packed up and actually ready to leave. We all enjoyed sleeping in a real bed last night!

We are so incredibly grateful to the fantastic team at CHOP and all that they have done for Nolan. We really had as wonderful of a hospital stay as possible. The nursing staff was incredible, and the specialists and pediatricians we saw daily were so caring and patient with all of our questions.

We did find out yesterday that Nolan’s overall picture is more of a central conducting lymphatic anomaly (CCLA) based on his imaging. There are many different variants of lymphatic malformations, and each is treated a bit differently. There isn’t a lot known about these yet, and they are doing research to look into more treatment options. The CCLA patients typically do not respond to the medications they currently have to treat other forms of lymphatic malformations. We will still do genetic testing to see if he would potentially respond to treatment, but they feel it is unlikely. He will mostly be managed through a low-fat diet and procedural interventions if/when needed.

Overall, Nolan has continued to amaze us every day! Looking back just one week, he had just come out of a major procedure with nearly 100 pokes into his little body and had a chest tube in for nine days, and today he is running around playing with all of his toys like nothing ever happened!! He is so resilient, brave, and just the happiest kid we know!! 

Thank you to so many who have supported us in so many ways from Caring Bridge messages, prayers, text messages, gift cards, care packages, etc.! We continue to be overwhelmed and beyond grateful for our amazing village!!! Thank you all from the bottom of our hearts!

We are beyond grateful to God for helping us through this all and protecting our sweet Nolan!! He gave us strength on the difficult days, and we felt his love surrounding us every moment!

While Nolan’s journey certainly is far from over, we are so happy to be past this major hurdle and looking forward to having some more normalcy again. We are planning to fly home tonight!!! Shhhh….we are surprising Ethan!! We cannot wait to be home together as a family of four again!!