Six weeks

It's Friday, week 6, which means it's time for the PICC, nephrostomy, and G-tube dressing changes. The nurses put a new needle in the port and a new dressing when the TPN was hung in the evening.
We stopped the feed this morning because the docs and nutritionists had it ramping it up every 8 hours automatically and Alan was giving indications that he was uncomfortable. Alan has never been good at starting with a high volume feed (back in the days we had NG and NJ tubes) and with his stomach and intestines unused to digesting food since he has been getting TPN over the last few weeks, it will take some time for his body to adjust. The glutamine supplements will hopefully help with that.

We restarted the feed back at 5 ml/hour rate tonight since he seems to have gotten past the nausea and gagging this afternoon but there was still no poop today, which would have made us feel better about the Pediasure making it's way through his system.

We took Alan for a walk, swinging through the cafeteria to grab some lunch. In the checkout, Alan pointed to a SnackWell chocolate cookie so we got it for him. Not that he ate it, but he had fun holding it for the rest of the walk! We're just glad he was interested in a food item.

When we got back from our walk we got to meet an amazing young woman named Summer Dale. She is a teen who was diagnosed with a Sarcoma last October. A family friend made up a batch of 'Team Summer' bracelets, with half of the proceeds going to Summer's medical expenses and the other half for her to donate as she chose. She wanted to use it to directly help other kids with cancer, to let them know they were in this together.

Summer had seen Alan around the halls of the Children's Cancer Hospital here at MDA and she wanted to do something for him. Through the nurses, she found out that we wanted to take Alan to Moody Gardens when he got out of the hospital to check out their Rainforest and Aquarium Pyramids, so they gave passes and gifts cards to our family to make the trip. We appreciate the gift and loved the chance to connect with another family dealing with cancer. They have set up their website for other families to sell their own "Team" bracelets and want to give us "Team Alan's Angels" bracelets. We love the idea that we could help other kids with cancer!



Snagged a SnackWell in the cafeteria!


Meeting Summer