Hi All!

Graham was able to WALK out of the unit (with the help of a walker) to get to the playroom this week. He loves the playroom and has asked about it every day since he could go. His team also coordinated getting him outside as well. He fell asleep before we went outside. He was startled waking up outside and seeing people whose faces he only recognizes with a mask on. When he woke up from that nap, he ate chik-fil-a nuggets and chillin’ outside. When Zach got to the hospital after work, Graham asked if he could go back out again. 

Little does Graham know how much of a production it is to get him out of his room. The machine that runs his BiVADs can only be unplugged for 30 minutes. It took him about 20 minutes for him to walk halfway to the playroom. We ended up putting him in his wheelchair and getting him there before we lost charge. It takes 6 hours for the machine to recharge fully. 

We are also limited to locations that have outlets. The normal area where kids go outside does not have an outlet accessible, so we had to obtain special permission to go to a location that has an outlet. I cannot say it enough – the PICU/CTS/Cardio/Child Life staff go above and beyond to try to normalize his life and get him out of his four walls. 

Graham should be off all pain and sedative medication on Wednesday, with his remaining medicines focusing on making sure his blood doesn’t clot and cause issues with his BiVADs. There have been a few comments about settling in since it may take a little while to get a heart. My heart breaks knowing that there are so many kiddos that need a new heart out there. 

Thank you so much for your support. Our current prayer request is for Graham to continue to get stronger pre-transplant, prays of thanksgiving for the team here at Cardinal Glennon, and prayers for all of the families involved in transplants – donors and recipients. One of the most kind-hearted, beautiful souls I know always signs off her posts with “love and light”. It is a phrase I often pray, especially for those in the transplant community. 

For those local to St. Louis, I hope you take a moment to get outside today, breathe the fresh air, enjoy the lower temperatures, and take in the beauty.