Staying in motion
t+6
Lucas is on day 6 since the transplant, t+6, and has had mucositis pretty much the entire time. It makes it impossible to swallow so they put a NG tube down his tummy through his nose. None of this is fun at all, but Lucas did it. Staying in motion is a key to success, and this includes the GI tract.
Many of you that read this blog are from Texas, and many of you don’t have power right now. If you are lucky you are running your faucets to keep the pipes from freezing. Having an NG tube in your body, is the same as keeping water running through your pipes, it keeps your body working, shedding layers, getting reps to your muscles with real food instead of just TPN , IV food. We are so proud of Lucas for doing this.
Motion is the Potion
Daily walks are very important for Lucas. Staying in motion helps keep muscles working and maintains mental focus and strength. If it were me, I might want to lay in bed all day and watch 80s movies or be alone in the dark. That’s not the best playbook. We notice a large uptick when Lucas summons the strength and courage to do ‘one more walk’ . On top of it all, he walks. On top of it all , he has an NG tube, on top of it all he shoots hoops. The capacity in this kid amazes us daily, but its hard on him. The fatigue, the mental perseverance fighting this requires.
On top of it all he perseveres, its the fight. Eye of the Tiger, for real.
Speaking of which, Dylan went to climb the Rocky steps yesterday, I snapped a picture of her with mommy at the statue park by the museum where the steps are. Cutie pie festival
Thankfully there are some bada@@ nurses and doctors here who have our back. One of them, her name is Anne, got Lucas to do the NG tube. She has 5 kids, she has put 1000s of them in. He didn’t want to do it, but she got him to. They all help getting him to walk, they all help us, making sure we have everything we need. They are a team culture.
One other thing I like about CHOP, they don’t really gaslight. Gaslighting is extremely common unfortunately in the healthcare industry. The path of least resistance. Not questioning the why. This place not only questions everything, they will come in and quiz nurses. Due to the amount of reps the team has had, and the seriousness of this transplant, there is no margin for error or not listening to parents. We appreciate this so much about CHOP.
Spotify - Bringer of Light Playlist
This is a Spotify playlist by our friend Karen, she made it so you can add songs if you find them in the spirit of Lucas, Bringer of Light.
Prayers
For Lucas mucositis to go away
For no more infections
For his body to accept and engraft Dylans warrior cells
For a sense of calm and control to come over Lucas and to help manage his pain.
For continued support and guidance from our care team, they have become better since we got here, every day they know us better and support Lucas better.
