The Journey of James Weston

Thursday, January 26th, 2023 Just updated the 1/24 post with photos of James checking out the new car. 😂 Today was all about the snuggles with Mom. James is getting more and more affectionate. Not only does he loves tickles but now we wants to give them too. He played with his new birthday toys and of course his favorite, the remote control. What he quickly realized was that Mom had fixed the remote so her phone controlled the TV instead. These hotels are getting fancier with their technology! We had a quick consultation appointment in Orlando while Dad handled work stuff elsewhere. Tomorrow we will get on the road to Atlanta! Trying to throw the remote off the bed Throwing a tantrum because the remote is gone Asking Mom to make it work View of SeaWorld 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

Wednesday, January 25th, 2023 James had a pretty rough night. He was awake starting at 4am sitting up and crying. Mom ended up having to bring him to her cot, where he eventually fell asleep around 7am. 😩 It was a great start to a very long day. In the morning, Mom got a text from the Medicaid case manager saying she reached out to pulmonologist's office again since she hadn't heard back. 🤳🏻 She found out that they submitted the prior-auth yesterday and submitted again today as urgent. So at this point our case manager followed up with CMS (Children's Medical Services) which is who his Medicaid is through. Eventually she said an approval was entered and to check with CVS if it was ready for pickup. Mom had 2 missed calls from CVS. 📞 Turns out they did receive the approval however they did not have it in stock. The pharmacist said he would call around to other local stores to see if anyone had it. He found one and said they could have it ready today. Overall our case man...

Tuesday, January 24th, 2023 Check out the new car! Here is a link to Dad's FB post breaking down his rational decision. 😂 The salesman came to the house around 10am to give us a walk-through. It was really cold outside, so Mom wrapped James up in a blanket and carried him out. Mom was back to back on phone calls trying to get the doctor's office to approve the prior-authorization so that the insurance could approve the antibiotic. Our Medicaid case manager helped Mom with following up with the pulmonologist office to get the prior-authorization. It really is crazy that they don't submit this automatically. No real progress was made today other than our case manager putting in a ticket to check on the prior-auth. Still waiting, and we leave tomorrow! Since James was just diagnosed with the trach infection and the coronavirus our physical therapist decided to do a virtual appointment. Mom put her phone into the tablet holder attached to the crib so that she could see James....

Monday, January 23rd, 2023 Today was Dad's day off and took in Mom's car for a tune up since we had a long drive to Atlanta this week for Dad's end of year awards banquet for Cutco. Mom spent the day with James. We received a call from one of the doctors at Nemours letting us know that the culture came back with a strong growth of stenotrophomonas maltophilia, which is a gram-negative bacterium. 🧫 😮 James has had this once before. It is antibiotic resistant and can be fatal for those i mmunocompromised individuals. It's a shame that the PICU didn't continue the Cipro that the ER gave him. James could have been on it for 5 days by now. Nemours wanted the pulmonologist's phone number (again! 😳) so they could inform them of the infection and let them decide on treatment. Mom decided to reschedule James' nutrition appointment at the hospital tomorrow since James was indeed really sick. We also changed PT to virtual. 📞 Eventually Mom heard from the pulmonolog...

Sunday, January 22nd 2023 Laundry day. 🧺 Dad watched James while Mom ran some errands. No photos were taken. Oops! 😕

Saturday, January 21st, 2023 Our goal was to get discharged today! Overnight James got back up to 45ml/hr feeds in his jejunostomy tube (J-tube).  Mom was able to talk to the doctors in rounds this morning! There were probably 10 people there. She let them know that we could do "this" at home. Literally nothing was happening, James didn't have an IV, wasn't on an antibiotic, not even on the ventilator during the day. They understood we were ready to be discharged. It always takes a while though. In the afternoon, the doctor that spoke to Mom yesterday came back in to let her know that James actually did NOT get a dose of Tobramycin yesterday. She was mistaken. Then shortly after another doctor came in to let Mom know that they wanted the pulmonologist's phone number. This was the third time someone had asked for it. Originally they wanted it to ask them about James getting cough assist therapy. Mom reiterated a few times that James did not use a cough assist or a ...