The Journey of James Weston

Thursday, February 24th, 2022 First day at Juju's, James got to know his big brother, Tommy, the Chihuahua. Tommy really just wanted some of James' toys, especially the ones that squeaked. James just wanted to pet the dogs. James was much more interested in them during this visit. When he went to pet Champ James decided to go in for a tug on his love handle. Thank goodness Aunt Robin was holding Champ and he was chill. James did his Passy Muir and had tastes of apple. Dad will leave tomorrow morning for his boy trips to go skiing in Colorado. James will have lots of visitors this weekend! "Our Boys" Rough night with constant alarms 🚨 Dad before he leaves tomorrow morning for Colorado "First Look" Favorite toy is a water bottle! P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...

Wednesday, February 23rd, 2022 We did it! We left in the late afternoon and got on the road for a 4-Hour drive. Mom packed the entire car by herself and it took 1 hour. Managed to fit everything like Tetris including but not limited to the oxygen concentrator, stroller, pack and play, two ventilators, two suction machines, four oxygen tanks, a pulse ox machine, a humidifier for the vent, his feeding pump, and all of our luggage. Mind you the supply inventory spreadsheet to pack for this trip included 104 things.  Video below shows how excited James was that we arrived at JuJu's. At first we thought we would be sleeping in the library but it turned out that the tiered car did not roll on the carpet, so we moved out to the hardwood floors near the front door. We setup Mom's air mattress and James' pack n play. James was ready to pass out because it was his bedtime. We use the massage table for his trach care and James fell asleep during. Eventually when Mom writes a "How...

Tuesday, February 22nd, 2022 In the morning we finally had James try his Passy Muir Valve with the step down adapter. Our appointment was at the hospital. We crammed into this tiny little office, Mom, Dad, our nurse, the Speech therapist and her soon to be replacement. Mom held James on her lap. James cried so loud and for so long! This was the first time we really heard James cry. Previous to this we heard him for cry for a few seconds when he had his ET tube upsized. This was different because James was aware of everything going on. Not only could he hear himself wail but he felt air and secretions in his nose and mouth for the first time. Mom lost it emotionally. We assumed we wouldn't be allowed to video, but come to find out afterward we could have. We are allowed to do this once a day for 3 minutes. She told us we could try again at home later today, since we took it out early. It's very important to deflate the cuff or else he will not be able to breathe. In the evening ...

Monday, February 21st, 2022 Mom ended up pulling an all nighter last night. James humidification chamber stopped working there is a symbol on the machine that was blinking red (triangle with an exclamation point in it). It looked pretty important and Mom was scared that something was really wrong. She looked up the manual online and all it said was that if this light was blinking red you should take it in for service immediately. Unfortunately it's the middle of the night and we don't even have a respiratory therapist at our DME to call for an emergency. Mom resorted to FB for answers. Overall consensus is that turning the machine off and back on sometimes solved the problem. So that ended up fixing the problem. We got the oxygen tanks and new nebulizer treatment delivered by our DME. Because of the timing of this delivery we needed to reschedule our Speech Appointment to tomorrow morning instead. P.S. Do you follow James' journey? James would love to read an email from you...