The Journey of James Weston

Thursday, June 9th, 2022 The day started with our new aerogen nebulizer not working properly. It wasn't clearing out after the treatment. Mom wanted to reach out to the Trach FB Group but FB would not let her post, so fortunately other Trach Mom she is friends with posted on her behalf to get answers. It turns out that sometimes you just need to run a saline treatment after the meds to clear it out. Simple fix! We've been using this nebulizer for the past 5 days and it has been worth every out of pocket penny. At first we purchased what we thought would have been the complete Aerogen Pro Nebulizer from a medical equipment website on April 20th who sells refurbished items. Once received we realized it was missing the control cable. They apologized for false advertising and offered a refund, but we were on a mission to find this control cable. Mom found it on one website that ended up being a scam (they don't actually carry anything, fake website to just take your money); Pay...

Wednesday, June 8th, 2022 You may or may not have noticed that the numbered day had recently changed. Well that's because one day we accidentally added 10 to the number. Mom had to go back through each post to figure out where it started. Only had to renumber a few months. 🤦🏻‍♀️ Today James had physical therapy where we focused on strengthening the muscles in his neck. Due to the torticollis James prefers leaning to one side over the other. One exercise we do is to have him sit on a bouncy ball and lean him side to side, allowing him to bring himself back to center. He does fine to his left but has a hard time coming back into center when leaning to his right. Another exercise is having James lay on your thighs went they are bent and by grabbing his wrists pulling him up straight. He is supposed to use his neck muscles for this as well. It's really important that when pulling him up that his wrists are turned out to activate his biceps, and so his shoulders don't dislocat...

Tuesday, June 7th, 2022 The morning started with changing James' outfit and the sheets. Unfortunately the overnight diapers, even with changing it in the middle of the night at 3am isn't making it through to the morning. Little boys find a way to get pee everywhere but in the diaper. Then James enjoyed some time in the ball pit! He is still tolerating his new vent settings! P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com

Monday, June 6th, 2022 We had James' pulmonology appointment in the afternoon and we received great news! We were able to make a wean to the ventilator settings. We decreased the pressure support by 2 from 20 to 18. We asked about how far the pressure support and the peep has to go down and he said 15 is pretty low for the PS and as far as the PEEP he isn't concerned about lowering it. The pulmonologist said that in 2 months we could start trials off the vent and work up to see where we are in December! These would only be for a few minutes a day to start. 🫁 So our next appointment in in August! Dad: "Doc, so can you tell me what time line you're thinking of for him getting off the vent?". Mom: "It's all been guessing game, right? It's like asking when you're going to be discharged from the NICU" Doc: "She's right". Because he can't promise a timeline. He is just guessing based on previous cases he's seen in the past. ...

*Please note if you are reading this update in your email as a subscription to "The Journey of James Weston" blog it does not show the videos uploaded to YouTube. Please click here ( bit.ly/JamesWestonBlog ) to go to the blog directly. Sunday, June 5th, 2022 James' day with Mom involved lots of playing and naps on Mom's bed. He has been trying to wiggle off of locations that are too high for him like his crib, mom's cot, and his big boy chair. We recently figure out a schedule that works for our family which allows Mom and Dad a 24 hour break each week. Between Friday, Saturday, and Sunday we each get a day to ourselves and the 3rd day is a Family day. Tomorrow James has an appointment, which automatically makes that Family day. This is his long awaited Pulmonary appointment! *Last week we suspected James might be sick so we submitted a sputum culture to the hospital lab. The good news is that it came back as normal and shouldn't prohibit us making weans to th...