The Journey of James Weston

Thursday, August 12th, 2021 7:30am James was headed down to Radiology with Dad. For anesthesia he got gas through his trach and meds via IV.  8:00am Dad was not actually allowed in the room. James went in for the procedure. 9:30am Procedure was a success! James now has a GJ.  James woke up and we noticed that his G-tube was filled with gastric juices from his stomach. It was shooting all the way up into the farrell bag. Really seemed like too much. Feeds were restarted at 32ml/hour, continuous for 24 hours all fortified breastmilk. Gastric juices coming out of the G (stomach). Shooting up to the Farrell bag. At the site we noticed his GJ was leaking around the stoma. It was practically pouring out onto the bed. Mom changed about six split gauzes before the nurse could get the doctor. They contacted GI for suggestions on what to do. GI suggested that we vent the G into a preemie diaper.  Good thing we have preemie diapers at home. Mom ended up putting a 4x4 around the butt...

Wednesday, August 11th, 2021 😷💉💰Covid Test Nonsense So yesterday in the evening they mentioned that James is going to need to get another covid test prep for the procedure. Dad let them know that he did not need another one because he just had one 2 weeks ago. After some back and forth the GI doctor said he didn't realize that he had just had a test 2 weeks ago and was okay with him not having another one. Well it seems as though that conversation never happened because this morning mom was bombarded by nurses, nurse practitioners, doctors (mainly the endoscopy team) demanding that James gets his covid test. Mom explained what she thought went down yesterday with the doctor being okay with it, but now they are saying that the hospital policy is that before a procedure a patient needs to have a covid test within the last 5 days. It is a little ridiculous that James has been quarantined to his room and was just tested 2 weeks ago and Mom was just tested 2 weeks ago. With all negat...

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...