08/31/2026
8/30/26
Well today was wild and woolly and contained a few sweet angels on earth!
We were at Maia’s grandpa’s house getting ready to have family dinner when Maia’s chemo tubing disconnected and hit the floor. I immediately cleaned the end of the line still attached to her with a CHG wipe and put a cap on it and we were in the car in less than four minutes heading to St. Louis Children’s Hospital. I called the hotline and spoke to the sweetest operator who said she would page out the Oncology Dr on-call. Within 10 minutes the Oncology doctor called back, and low and behold it was the amazing Dr. Oduro, the fellow on our team who has actually been involved in Maia‘s care since we were admitted to try to figure out her diagnosis.  Dr. Oduro quickly assessed the situation and told me she would call the ER and have them prepped, call the pharmacy to see if they had the medication on site, and have orders ready when we got there. Once the line is disconnected, you have four hours to get the medication restarted or they have to do another 48 hour hospitalization to make sure that the reintroduction of the medication doesn’t cause cytokine  release syndrome which can get very serious very quickly. This is an over response of the immune system and has to be medically attended to immediately, that’s why they need to keep you in the hospital. But if they can get the medication restarted quickly enough, your body won’t “forget it” so there is not concern for the cytokine release syndrome.
When we arrived to the parking garage, we got about the best parking space that you can possibly get. Quickly moved across the street to the emergency department where they were prepped and ready for us. They had us back in a room in no time, and the ER doctor came in in less than 10 minutes to assess the situation. I gave him the information and told him we had four hours to get that medication back on her to avoid a hospital admission. He didn’t waste any time! 
Emily and Caleb (from the 9200 hall where Maia is always admitted) were in the room in a matter of minutes. They brought supplies with them, and fortunately there was a 96 hour bag of Blinatmomab in the refrigerator on their floor. They just had to make sure that there was no risk of contamination where the line became detached. They quickly assessed the situation and realized that the connector piece had remained intact so there was no risk of contamination in her chemo line or blood. This was fantastic news because had there been a breach there, she would have had to have had blood cultures and antibiotics. Emily and Caleb worked together quickly and efficiently, problem-solving and getting her port de-accessed, cream placed on the port to help numb it, and then re-accessed in about 25 minutes. (The port access gas to be changed out once a week to decrease infection risk, and she was due to have that done on Monday, so they did it a day early since the new bag of medicine would last 96 hours.) Next they had to get the Blina restarted. The difficult part of this is that when Maia is in the hospital they use inpatient pumps, but when she is at home, she has home health pumps and so they have to be stopped and reprogrammed. This takes specific steps and passwords to maneuver through the process and they have to find the correct access codes as they are different than the inpatient codes. This proved to be a bit challenging, but they remained calm and collected and they got it done and with about 42 minutes to spare!
During this whirlwind of an evening, Maia knew she had to get some homework assignments finished and turned in by tonight, so she had her Chromebook out on her lap on the ER cart trying to work on assignments. When the Internet wouldn’t work for her on her chromebook, she went to her phone and did what she could on there. She looked at me and said “Mom, you might have to email my ELA teacher.“ Lol! 
After they released us we came home and Maia immediately jumped on her Chromebook at home to try to get her assignments finished. I think she was pretty pooped and is actually in bed already which is not her norm but I’m sure some extra sleep will be very good for her.
