The Journey of James Weston

Thursday, March 24th, 2022 Today the bolus feed gave Mom some trouble. James wasn't really tolerating the rate that fast. It's a fine balance between hanging the Farrell Bag to high and gravity feeding him or hanging it too low and draining his stomach contents. If it's hung at just the right level then he will get fed and still be able to push back air if he needed to into the Farrell Bag. We are still figuring that out. For now, lots of outfit changes, soaked crib sheets, and laundry for Mom. 🧺 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, March 23rd, 2022 Today Mom put together an Ikea shelf to extend James' room. Since we relocated the large bookshelf to Dad's home office we could open up this space for James. Imagine taking your living room and removing half of the items so you could turn it into an ICU nursery. This is where Mom and James spend their day. It's a small space so it has to be organized and accessible.  We also started James' bolus feed in the morning. Mom made sure to vent his G-tube before given him his prevacid through his G and then his 2 hour bolus which we are doing at 95ml/hr for 2 hours for a dose of 190. Then James got a 2 hour break. So far so good! We were able to get this all done before PT in the afternoon. In the evening we had James practice with his Passy Muir valve getting ready for the big day on Monday for his swallow study. P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How hea...

Tuesday, March 22nd, 2022 We had an early morning speech appointment. The purpose of the appointment was to prepare us for the swallow study next week. James used the passy muir valve but cried this time at the end probably because Mom was holding him.  After the appointment a respiratory therapist from our DME was supposed to come right afterwards so we rushed to get home. She ended up showing up 1.5 hrs late. Our expectations of our DME are so low at this point. When she showed up James was finally taking a nap. She put in James' settings to the new ventilator and took our broken one back with her.  Mom had purchased some fabric trach pads on Etsy that a ton of Trach Moms had recommended. It turns out they were too thick and not allowing a good enough connection to the stoma. This caused a drop in his tidal volume and oxygen. Once we switched back to the 2x2 gauze his numbers went back up. This was after a two day investigation, asking advice of other Trach Moms on FB, calli...

Monday, March 21st, 2022 Still waiting on our DME to deliver us a new ventilator. Our backup ventilator hasn't been working since March 1st! Supposedly they are going to come tomorrow.  Today the family heads back to Jacksonville. Juju got cuddles before hitting the road. Leaving us with a ton of prepared meals and snacks! 😋  James started breaking out in a rash the same one he got before when he was on Bactrim. Small tiny little bumps on his face neck and chest. When Mom had brought this up to the Doctor in the hospital he dismissed the symptoms as just baby rash because they didn't look like hives. However the timing on this rash both times while on Bactrim has Mom questioning if he is allergic. 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...

Sunday, March 20th, 2022 James had a photoshoot with Aunt Robin. His favorite games is peek-a-boo, except we say "Where is James? There he is!" He loves to sleep his his foot hanging off the railing. If you try and move him he will wiggle right back to this position. 🦶 We spent the whole day renovating Dad's home office. You can check it out on The Better Than Rich Podcast . James spent some time in his big boy stroller seat so we could watch him close by.  He is feeling much better since the antibiotic is in full swing now. We will be on this until Friday. We are still holding off on the new bolus feeding schedule for now. 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...

Saturday, March 19th, 2022 James cuddled with Aunt Robin and had puppet shows with Juju. Today James started really making a lot of noise with only a deflated cuff, with no Passy Muir valve. Videos below.  James enjoyed a cold wine glass to his teething gums. He now has 5 teeth showing. James also loved his star projector light show that he received from Beverly! ✨ 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...