The Journey of James Weston

Tuesday, August 17, 2021 So our heater alarm on the vent went off all night. It's a fun little musical beep compared to all the others! No one was really sure how to fix it. We tried a whole bunch of different things! One thing we tried was that the exhalation valve was blowing on the heater cooling it off (that didn't help), then tried emptying the circuit full of water (it wasn't that either), Mom had suggested changing out the wires... Maybe sometimes they just need to be serviced? The temperature was not staying up. It was day shift before the alarm stopped going off. James had a large bowel movement at 7:30am. This seems to be pretty consistent in the mornings. I think we have figured out the correct dosage of milk of mag. Mom spent the majority of the morning on the phone with Medicaid. It was pretty much a nightmare getting transferred to multiple people, having the website not work, having to talk technical support to fix issues, having people just decide to enter i...

Monday, August 16th, 2021 We had such a sweet nurse last night she came in any time his heart rate was up and sang him songs. Mom will never complain about nurses lovin' on her baby. James had a bowel movement around 5am. Of course you know when it's shift change when new nurse takes over, alarms are going off but no one is coming in. It's always a good sign that it's going to be a rough day. Mom and Dad watched the 24 required videos on the TV regarding G-tubes and tracheostomies. We also completed CPR training. We learned what to do in an emergency situation, if his chest was rising but he was unconscious. Doing CPR on a baby with a trach is a lot different than a baby without a trach. He's also really important that Mom and Dad feel very comfortable with this since a lot of times first responders are not familiar. Just recently in Mom's Facebook trach group there was a situation where the first responder did not bag the baby correctly and the baby did not mak...

Sunday, August 15th, 2021 Late Night:   Needed a suction around 12:30a and around 3:30am.   James and Dad were able to sleep a good amount around that from 9:30p on after James got his evening cocktail of melatonin and other meds.   Seems like James is chewing on his secretions as he’s trying to go back to sleep, but James decided to stay awake from 4a until after shift change at 7am.  Early Morning:  He had a poop filled diaper to begin the day and another one around lunch time.  Since his Gtube is going into a diaper to release the bile, they are tracking this total every 6 hours and every 24 hours.  He had 286 ML of output in 24 hours from 7a-7a. He has a weird wheezy cough. We will continue to monitor. Doesn’t seem like a concern at the moment.  Dad spoke with the doctor today.  He's down to clamp the gtube line for one hour every 12 hours to start to see how James does.  Mom mentioned that the gastric juice needs to flo...

Saturday, August 14th, 2021 He has been doing this new thing where he is coughing, then starts choking, then turns purple quickly. He is coughing up his own secretions out of the trach, but it is scary to watch.  Pulmonologist stopped in and in summary said that he does not want to try to wean the PEEP while inpatient. He said that he believes we should get the GI situation under control before going home. Mom informed him that the doctor will be taking over this week is going to be pushing for our discharge. He said that it is good that someone on the team is pushing for it. And then the GI doctor stopped in and said he heard Mom spoke to the pulmonologist about concerns regarding the G-tube leaking into the diaper. Concerns about how long this is going to be. He said that it should only be a few days. Mom let him know about she reached out to the G-tube Facebook group of moms and a lot of them say that they've had to vent into the diaper for several months, sometimes permanently....