The Journey of James Weston

Wednesday, June 22nd, 2022 James showing us he can throw a fit by kicking up his legs in the air and slamming them on the bed. He is very much aware of what he should not be getting into but he can help being so curious. 😂 Peek-a-boo is still one of his favorites and it will crack him up at any time! 🫣 We spent most of the day packing for our trip to Jacksonville. We will leave pretty early in the morning. 🌅  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

Tuesday, June 21st, 2022 James woke up Mom by pulling down the iPad off of the holder that hanging off of his crib. Two things make loud snapping sounds which alert us that James has either pulled down the iPad or pulled his Farrell Bag! ⚠️ Both of these are not good!  One of the new Trach Moms asked in the FB group for photos of the home setup and emergency to go bag. Below are the photos Mom shared. We definitely have one of the best setups! We are still not feeling well, but hoping that this will be wrapping up soon! 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 20th, 2022 Lots of naps and visits from squirrel 🐿️ friends today. We've had several outfit and sheet changes as James' G-tube is leaking really bad. His output into his Farrell bag has increased to 150mls. 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 19th, 2022 Last photo shows how much James looks like Dad when he was little. We are still fighting Covid with lots of naps, Tylenol and Motrin.  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

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...