The Journey of James Weston

Tuesday, July 26th, 2022 Today we had an emergency where the exhalation valve on his circuit broke. The bottom piece came off and the rubber part came out. The ventilator was alarming DISC/SENSE which is telling us that James was disconnected. While Mom was trying to fix the broken plastic piece which seemed like the fastest fix, she screamed for Dad to get the backup ventilator. He was in the middle of a call but he immediately stopped what he was doing. He ran out to the living room, grabbed the backup vent in the closet, disconnected it from the charger, and turned it on. Mom immediately connected James to the backup. We are not positive that James was really disconnected from the ventilator since it was the only the exhalation valve that was broken but it wasn't worth taking a chance. This is why it is extremely important to have a backup ventilator. If not, our other option would have been to just bag him while the other person would set up a new circuit on the ventilator. Dad...

Monday, July 25th, 2022 Blog Fun Facts - The photos are in order as they were taken during the day, with the exception that the first photo is always the cover photo ✨ (favorite)! Today was Dad's day out of the house so James hung out with Mom. First he worked on some projects around the house with his tools and his workbench. Then Mom cuddled him for a few hours. We believe this is helping with James wanting to be more affectionate and are trying to make this part of the daily routine. This all stems from James being a micro preemie. Touch when only weighing 1lb is painful; this so why micro preemies are on morphine. James wasn't held for the first 48 of life and then only a handful of times afterwards until he received his trach and became more stable, which was months later. We are seeing improvements everyday. For instance, James now plays with Mom's hair and Dad's beard. James' rash has seemed to subsided. Thank goodness because this was the day we needed to ...

Sunday, July 24th, 2022 James received 2 new toys in the mail from Cousin Janet. Dad played guitar as James laid on Mom's cot. Mom hung new art near James' crib to brighten up the space. Yesterday she painted the frames in the hotel room. The art is done by an autistic 13 year old from South Florida with exceptional talent. You can check out his work here ( https://vichysart.com/ ). On a side note, Aunt Robin has another art show at the end of August in Jacksonville. Please email James for details. James still loves his baths 🛁, and will soon be strong enough the flip the tub over. Since he is teething bad (Mom had spotted the two new ones on the bottom of either side of the front 4) he has been wanting to put everything in his mouth, even towels. Video below shows James reaching for Dad to give him another hug. This is a first! 🤗 Watching Dad play guitar. 🎸🎶 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...

Saturday, July 23rd, 2022 Dad got Mom a hotel for the night since next weekend he would be out of town. It's hard going 2 weeks in a row on little sleep with no down time. Even though James is more stable now if he is disconnected from the ventilator we don't know how long he can breathe on his own and it's not something we just want to test out without a Doctor's supervision. Dad was experiencing the same thing with the pulse ox not working. Yesterday Mom had asked one of the Facebook groups ("Premies on Oxygen") what the issue could be and would the DME replace the cable. Unfortunately that Facebook group is a joke, so in order to get actual answers Mom needed to post in the Moms of Trach Babies group. Immediately everyone said their cables would die and it was a common issue. So while Mom was out running errands (which is always just getting something for James) she called the DME' answering service and left a message. After talking to about 5 different...

Friday, July 22nd, 2022 James rash is still pretty bad. Mom gave him 2 ice packs (that were thawed out but still cool). James is also teething while dealing with this rash. He still loved getting tickles from Aunt Robin though. Mom noticed that the pulse ox machine for the 2nd night in a row was just alarming the whole night. It would read straight flat lines as if he was disconnected or came off his foot but James was sleeping, not even moving and everything was secure. Mom suspects it is the pulse ox cable. We also tested it on our fingers and it wasn't working.  Juju, Aunt Robin, and the pups headed back to Jax in the evening after making several amazing meals for us and bringing James lots of new toys. 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