The Journey of James Weston

*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. ...

*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. Saturday, June 11th, 2022 Family day started out with us on our way to the Zoo even though it looked like rain. Dad thought that we could make it into the park fast enough to the indoor air conditioned manatee exhibit. Once we pulled into the parking lot, we watched groups of people leaving. Dad got the stroller out and then the thunder rolled in. Mom thought it wouldn't be worth it to be stuck in a torrential downpour and have James' ventilator die on us. So we headed to the International Mall again instead. There is so much to see, it's like Disney World for James. 😉 We browsed Nordstrom's for some reasonable priced grey shorts for James. 🤣 Then we grabbed an early dinner at the Grand Opening of a Greek Restaurant inside the...

Friday, June 10th, 2022 James has a new favorite expression. He sticks his tongue over his top lip. Sometimes it's when he is about to laugh and other times he's just really focusing on something. After our morning physical therapy, Mom made banana bread for the first time because we had a few overly ripened bananas🍌. Unfortunately the calorie count per slice did Dad in for the day. 🫢 Today we started James on his new G-tube formula called Pediatric Compleat. It only took several months for us to get this from our supplier. We ended up just switching James cold turkey from Baby formula because my GI Doctor did not give us any instruction to do things differently. He seemed to tolerate it well! 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