The Journey of James Weston

Saturday, June 18th, 2022 James woke up with a 103.2 fever. 🤒 🥵 Mom immediately called the Complex Care Clinic and left a message with the messaging service. She got a call back from the on-call doctor shortly after.  Mom explained the situation that she tested positive for covid and James now has a very high fever. We've been doing the Tylenol and Motrin and now have added a cool washcloth to his forehead. He didn't try to remove the washcloth at all, just showing you how bad he was feeling. The Doctor told us that we did not need to go to the ER unless he needed an increase in oxygen, which he did not. They very rarely would give antiviral medication and there is not much they can do there. Plus they honestly don't want covid patients at the hospital.  Today was a really rough day. Mom was mainly just dealing with a cough but sometimes it would become debilitating. Where you can't catch your breath. It's really hard to care for your trach vent baby while you...

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