We had an eventful past few days over here, Brayden had a great time with the family at the Clovis Rodeo and it was nice to be all together and focused on something that isn't the reality of our life lately. On Friday he was very tired and slept most of the day, this has become a common result of any significant activity he engages in, and Saturday morning he had a headache we managed at home. In the early evening he spiked a fever and said his head was hurting again so I attempted to give him some pain medicine through his j-tube, the tube seemed to be working fine but then about 30 minutes later he came out of his room holding his tube in its entirety. At first we thought the tube had dislodged itself and slipped out so we drove to Children's ER, thankfully the ER team works quickly at getting the "Craycroft kids" (oncology patients) into rooms quickly to avoid risk of infection. They took blood cultures to assess for an infection since he was feverish, gave him fluids and some intranasal medication for pain and anxiety since he was pretty worked up from the tube falling out. Since he is such a unique and complicated case, the ER attending called the pediatric surgeon to assess his tube site and she told us that the tube had actually broken off at the tip and that's how it had came out. With other kids that have GJ tubes they can usually replace it bedside with just some calming medication but Brayden is at a much higher risk for intestinal complications without a stomach and a reconstructed intestinal tract so the surgeon felt it was safer to schedule him for an IR procedure with anesthesia instead. Because he was still running a fever and is dependent on the tube for nearly all his nutrition and all of his medications, they decided to hold him for observation and fluids overnight in the ER until the IR team could be called in Sunday morning to replace his j-tube. Originally, it was supposed to happen first thing in the morning but as it tends to do in the ER, we were bumped twice in the morning so he didn't get back into the IR suite until around 2pm Sunday. Thankfully the IR team was able to replace his j-tube with minimal issues and we stayed in post-op recovery for just 2 hours before being released home. He did well coming out of anesthesia and the VCH team did a wonderful job with controlling his pain throughout our 22 hour stay which is usually one of the hardest parts of procedures for Brayden. 

This Friday we head back to City of Hope for a follow up appointment with his oncologist and to review the MRI he had last week. We take each day, one day at a time. Some days are good, great and awful but I am grateful that we continue to have each day with him despite the challenges. 

He is incredibly brave and stronger than I could have ever imagined, he makes me so proud each day to be his Mama, especially on the hard and awful days, I am inspired by his strength and optimism.