The Journey of James Weston

Tuesday, August 10th, 2021 Last night we had a nurse that took it upon herself to come up with an improved breastmilk prep process to help everyone get on the same page. In the PICU, they do not have a "milk room" which is a team of team solely responsible for providing breastmilk to the RNs when needed. The PICU nurses need to count, thaw, measure, and prep all of the breastmilk. Sometimes this can be time consuming. There is a fine line between prepping in advanced and wasting milk. There are strict guidelines from the CDC regarding breastmilk. Once frozen breastmilk is thawed it has to be used within 24 hours, even if it's in a refrigerator. The key word is "thawed". In the middle of the night we changed the end tidal CO2 and it drenched James' onesie. So Mom put him in just a top. At 8am, James projectile vomited a lot of his feed all over himself. Time for wipe down bath, trach care, and 2nd outfit change! They decided to wean methadone again today. The...

Monday, August 9th, 2021 😫 James needed to be suctioned every hour last night from 12am to 8am. Mom also vented him and changed diapers as needed. He had a few spit ups throughout the night where his face and neck would be wet. 😥 8:00am 🤮 Projectile vomited even though Mom was venting his G-tube nonstop with a syringe. 🤷🏻‍♀️ 8:45am He was supposed to have labs done by the IV team but they needed to tend to an emergency. James was also supposed to be scheduled for an x-ray but supposedly GI never put the order in (?). We waited all day for those things to happen. It's pretty hard to schedule a trach care or feeds when we don't know when a procedure will happen. 9:30am 🏋️‍♂️ Physical Therapy worked with James and did a new position where they rolled up two chucks to make a really thick bolster and sat him on top as if he is riding a horse. This way James gets pressure to the bottom of his feet and strengthens his core. Our homework for this week is to make sure that James i...

Sunday, August 8th, 2021 James decided to give Dad a fairly easy start to Sunday. He woke up at 12:30a, not  agitated, just awake. After a small chit chat and a vent, he went back to bed. Only needed 2 vents during the night.  “Good morning Dad” with an eventful start to the morning.  Threw up around 6:30am. Then two more spit ups during the next 30 minutes.  Total of 4 spit ups and  3 outfits. 😞  And then … the poop 💩 began!   Three poops between bedtime and lunch time. One even went up his back causing another outfit change. 4th outfit of the day!  Doctor came by to discuss an explanation of G/J tube and believes that's a good direction for James. He drew how it works on the door window with a dry erase marker. It was very well explained to Dad.  Essentially, the J tube goes into the intestines and the G tube stays in the stomach. The G port will allow us to vent the gas and the J port allows us to feed James.  Even though James is h...