The Journey of James Weston

Saturday, September 24th, 2022 Today we finally got the Cipro approved with the help of our Medicaid Case Manager who fought for us all day yesterday. While Dad was out picking up the antibiotic he also purchased more Multivitamin that we would run out of soon. We typically get everything filled monthly through Amazon's Subscribe & Save but they have been out of stock on several things lately. We also tried to get his nebulizer treatment filled, called Pulmicort, but they didn't have that available today. We also got James crusin' around the house in his joovy walker with his ventilator bungee corded to board on wheels. We made sure that the walker would pull the board without pulling at James' trach. This involved lots of bungee cords and Velcro straps. Besides the ventilator we also connected his feeding pump and Farrell bag. Unfortunately James wasn't into actually taking any steps on his own so we pushed him around and ended up attaching a rope to drag him. ...

Friday, September 23rd, 2022 We made it into Jax pretty late last night. James' sleep schedule is always off at Juju's. 😴 Forgot to mention that yesterday our DME company dropped off our new oxygen tanks. We had seven to replace. He was also dropping off all of our monthly respiratory supplies. Our DME is located in Melbourne, FL which is a good 3 hours away so he made it just in time before we had to leave for our appointment in the afternoon. He gave Mom a paper to sign that asked us if we were going to be going to a shelter. Mom was pretty shocked because we had no idea that a hurricane was coming. We do not have cable or a television downstairs, and nobody was really talking about it on social media. It's a good thing that we had already planned to go to Jacksonville for the weekend. Living in Florida we've been through several hurricanes and was even caught in the eye of the storm during Irma when it hit Jacksonville in 2017. 🌀 Today mainly consisted of Mom fight...

Thursday, September 22nd, 2022 In the middle of the night James' required more oxygen. He has been okay at ⅛ (.125) for a while but now his saturation was dropping. Mom went through the checklist and tried all the things... Suctioning, sat him up while he was sleeping and did chest PT, checked the pulse oximeter, replaced the pulse ox probe, unplugging and replugging cords, turning equipment off and back on, ended up even getting the backup ventilator and switching ventilators to see if there was a difference. Nothing was helping. Mom ended up increasing his oxygen to ¼ (.75) and with that he was still only satting at 95%.  In the morning James needed a lot of suctioning and we were pretty positive that this trach infection was starting to show itself again. About 2 weeks ago James showed similar symptoms (increased respiratory rate, increased heart rate, need for more oxygen, lung retractions, and increased secretions). We could tell that James's body was trying to fight it bu...

Wednesday, September 21st, 2022 Our AC broke again! 🥵 At 4:30am this morning Mom was changing James' diaper and realized it was really warm. It got to about 85° and it was only warm air blowing. Mom turned on a fan and removed James' blanket. After pouring bleach and vinegar down the drain line thinking maybe it was clogged, nothing changed. Dad contacted our landlord in the morning and luckily enough he had an AC repairman out right away. It was the "freon leak guy",. After finding out it was a broken condenser it took a several hours for the house to cool down and expelled the hot air.  We ended up moving PT to this morning since tomorrow we have a GI appointment that conflicted with our normal schedule. It was a pretty busy day since James only had a 2-hour break between therapy appointments and that is also when our RT stopped by for a ventilator check. His early intervention appointment was still scheduled for the afternoon. James managed to get a nap in between...

Tuesday, September 20th, 2022 Today we had physical therapy and then right afterwards we had a speech consult. Both early steps therapists were there so it was a total of 3 therapists. We did the 10 minute trial off the vent during the speech appointment. We also discussed a few things, like not going backwards in using a bottle and instead go straight to a using a cup for drinking and not using the sign "please" for "help" as this can get confusing later. James showed her what signs he can do and she was impressed since he wasn't doing this in the last visit. We talked about letting James make a mess when he is trying new food so he can learn new textures. In the evening James tried peaches for the first time and just about finished half of the container. 🍑 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