The Journey of James Weston

Friday, August 20th, 2021 12:30am:   Mom experienced the first rain out. James had a bunch of water go down his tubing causing him to desat into the 40s and Brady. Turned on the lights and suctioned him several times. He was really pale but stayed asleep the whole time. Super scary that he did not try to cough. The nurse had the RT come in. The RT said that unfortunately the LTV is just a really wet circuit. She was wondering if we were going home with a heater because she suggested him just being on an HME instead. That way we wouldn't have to worry about rain out. We are going to have to look this up in the FB group because Mom feels like she’s getting different information from the RTs here and from our Brownings RT. 3:30 to 4:30am:   James is really irritated, passing gas here and there.  Mom even tried venting with a syringe again. She changed two diapers and one preemie diaper, sat him up and just patted his back for a while. Perhaps he needs Albuterol or Mylicon. H...

Thursday, August 19, 2021 -Written by Dad Dad took over so Mom could sleep at home before they do their Room-in tomorrow night.  James s lept from 930pm-1:30am.  He REALLY needed it. He’s been pretty cranky and unsettled for a little while, so for James to sleep and rest is great.  We did a diaper change, suction, changed the drain diaper, did a reposition and BOOM! … He's back asleep after only 30 mins. 😴  Then, like clockwork, James is up again at 5am with a big poop to start the day. Overall, it’s been pretty good tonight.  A few days ago we had a Baby Yoga Instructor come in to meet with James and brought the most amazing book called “Breathe Like a Bear”.  It’s all about breath work, humming, and how to teach kids how to connect with their body through the most adorable approach. Dad read James the first chapter titled “Calm” and it is so good!  The section titled “Hot Chocolate” had Dad teach James how to blow softly like it’s really hot, then ...

Wednesday, August 18th, 2021 ⏰ James randomly woke up at 1:45am and stayed awake until 3:30am. He needed to get suctioned and was drowning in secretions. Mom dressed him since he was freezing and his trach was rubbing on his chest. Also his gauze had come out from his trach and his G-tube was leaking. Not to mention changing both diapers (one from his G-tube). He was awake because he had a visitor on night shift!  🫁 It was James' favorite Night RT! It was so nice of her to take the stroll over on her break to see James before he goes home. At first Mom was like who is this person at the door who is not our nurse. It's pretty dark in the room. But it was a very welcomed surprise! Also we are ecstatic to hear that she will be submitting her lullaby along with another RN or two 😉. I can't wait to see the video! James always looks so much bigger to people that haven't seen him in a few weeks, sometimes it's just a matter of a few days! He is definitely turning into a ...

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...