The Journey of James Weston

Friday, June 17th, 2022 We have been doing extra Albuterol treatments as well as Tylenol and Motrin every 3 hours. Some of the symptoms of having a sick baby on a ventilator is that they need extra suctioning, and since their body is creating this extra mucus it is also coming out of his stomach either into the Farrell Bag or directly from the stoma. James hasn't needed an increase in oxygen which is good. Currently Mom is doing worse than James. Dad was able to sleep downstairs last night to help Mom get some extra rest. One good thing that happened recently is that our new Medicaid Case Manager has actually followed up on some things and is making progress. She sent Mom a text letting her know she's working with our pulmonologist's office regarding the missing suction machine, order for the pediatric oxygen concentrator, and authorization for the Farrell Bags. Our previous Medicaid Case Manager, whom we had had since August 2021 (and was recently promoted 😆), had never f...

*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. Thursday, June 16th, 2022 We are all feeling a little better today. Mom doesn't have the body aches, chills, or much of a fever. We are hoping that this was a short lived version of the virus that has been going around. Today Mom let James explore his first set of crayons and color book in his water table. 🖍️📘 He went nuts! Video below. A lot of research went into choosing the right crayons for development of his fine motor skills. Also ones that were safe and nontoxic, crayons that didn't leave a colorful residue on their hands, and ones that actually left a vivid color on paper. Not too delicate, not too big, and not too small, just right! 🥣 Dad then gave James a guitar lesson except James suspects Dad of magic since he cannot make...

*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. Wednesday, June 15th, 2022 Mom retested and ended up testing positive with Covid. All of her symptoms were matching everyone's who already had it. All the typical flu like symptoms like body ache, fever, sore throat, and headache. We started James on Tylenol and Motrin every 3 hours switching back and forth. Our temps were up and down, as soon as we thought we were fine we would go back up again. We did our weekly trach change in the evening. James was feeling a little better playing keep away with Dad with a new Trach. Video below. Mom did not have the energy to do a circuit change also so the goal is to get that completed in the next day or two. P.S. You can email James your love and support as often as you’d like. Mom and Dad read these ...

Tuesday, June 14th, 2022 A few days ago, Mom emailed our DME a list of concerns... In summary, we need one of our ventilators replaced, we're still without a portable suction machine, waiting on our Pediatric concentrator, updated them on the contact information for our new Medicaid case manager, still haven't received Farrell Bags since January, and lastly ask them to hold on some supplies. Well the only thing that was followed up on was the ventilator issue. The respiratory manager asked Mom to record a video of the ventilator clicking. Video below.  So Mom recorded a video of the ventilator clicking, uploaded it to youtube, and then sent the link to the respiratory manager. Immediately he knew what the sound was, the solenoids, and had one of the RTs call Mom. 🤳 The RT called Mom and asked why she was told to call because she wasn't given any information. Seriously. That's how organized this DME is. So Mom explained the whole situation and basically let her know tha...

Monday, June 13th, 2022 Today was Dad's day out of the house. James taught himself a new sound kinda like "Yay" or "Yeah ya" and sometimes "Day". Video below. He is very curious, as his lullaby goes, and he was mesmerized by the screws in Mom's cot. Anything new is very intriguing! Ready for a Nap 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

Sunday, June 12th, 2022 James spent the afternoon with Dad while Mom got out of the house for a few hours. We finally received our feeding pump cover from Etsy which allowed us to hang James' feed for 8 hours overnight. The bag has two pockets for ice packs which keeps his formula cold all night. By the time the feed runs down the 20ml tubing the formula isn't that cold going into him. It's also running really slow at only 32ml/hr. James is till waking in the middle of the night between 1am-3am and needs to be suctioned, or lost his pacifier, or just doesn't want to be covered with a blanket anymore. So we're still getting up most nights to assess him and make sure he is okay. No alarms are going off when he is agitated,we just have to listen for an increase in respiratory rate which we can hear because the LTV allows us to hear each breath. 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. ...