The Journey of James Weston

Saturday, February 18th, 2023 James spent the day with Dad and watched a lot of Sunny Bunnies. Since James is now more active it is very exhausting chasing after him when he is getting around on the floor. We do not have nursing since Home Health nursing has lost our trust. Only Mom and Dad can watch James. We're still trying to get used to this life. Not only having a child but a medically complex child who needs 24 hour supervision. That means not being able to just leave them in a crib and go take a shower while they nap. No, someone must be watching at all times. Even when you are alone watching him going to the restroom is a quick event usually with the door open. So if Mom can get one day to herself out of the house she will take it because she knows that James is safe with Dad.  🪣 Once Mom fills her bucket she can defeat the physical, mental, emotional exhaustion to handle another 6 days in a row. Only having a 24-hour period to ourselves versus having the whole weekend and...

Friday, February 17th, 2023 In the morning, Mom and James worked on standing. We will be using whatever distraction keeps James standing. Right now he is loving the Mickey Mouse club and puzzles. Great news! The caps came in from Mom's online order this afternoon! Much earlier than expected! So this evening we tried James fully capped! He lasted from 5:45pm to 7:45pm. Our ENT doctor let us know what to look for when he needed a break from it, because he would instantly get upset. At 7:45pm, it was time to put him on the ventilator anyways because we needed to do his nebulizer treatments. For some kids it's easier to tolerate the cap than the passy muir valve. James had no issue switching from the HME. Over the next week we will be keeping the cap on for as long as he'll tolerate but switching it out for the HME during naps. Currently we are still keeping him on the ventilator at night until Mom discusses the sleep study with the Pulmonologist. She will follow up with them o...

Thursday, February 16th, 2023 🗣️ Today we had Speech Therapy on Zoom. Our Physical Therapist used her time slot for the consultation since Speech needs to accompany another therapist. Didn't get much out of it. Doing any therapy via Zoom is super hard. Hoping to get started again with Speech at the Hospital. Mom also bought an online course. 👩🏻‍💻 Tonight was Family Dinner Night so we decided to go to get sushi 🍣. Although we didn't get to see James' friend, we ended up having a new waitress who remembered James and couldn't believe how big he was getting. The best thing you can do as a server to compliment their children, hello! James loves miso soup! 🥣 🛠️🧰 Afterwards we went to Lowe's to see if we could find a cap that would fit on James' trach. This was James' first time in a hardware store and it was like he was at Disney! Mom brought an extra trach and we headed to the plumbing section. 🪠 The part we needed looks like the item pictured below. Un...

Wednesday, February 15th, 2023 Mom was able to move up our ENT appointment to early this morning. For the past couple days Mom had been on the phone between ENT and the pulmonologist to make sure that the sleep study results were sent over to ENT in time for this appointment. The doctor said the sleep study results hadn't been sent over yet but that it didn't really matter because James was doing great. We discussed the next steps on scheduling an airway evaluation in the OR. Our options were to schedule for either end of April or beginning of March. Mom opted for beginning of March. She said that we could start capping James at home and start weaning his nap times to capped by letting him fall asleep with a cap on for a little bit, switching to an HME, and continue extending the length of time on the cap. Unfortunately she said she did not have any caps in the office and would need one of the physician assistants to pick some up at the hospital across the street. Getting them ...