The Journey of James Weston

Saturday, April 23rd, 2022 We got to call in the morning to come in for a procedure at noon. Over the phone Mom asked the Radiologist about the sedation and let him know her concerns. He stated that they would not sedate and then proceeded to list all of the "prestigious" hospitals where he had worked. Just some advice but anytime someone needs to name drop their previous employer, education, or job title, it's really off-putting... When James woke up 7am you could tell he was still very sleepy. We were in the ER pretty late and James' sleep schedule was off. So Mom ended up holding him in a chair and he slept in her arms for an additional 2 hours! 🥰 At this point, James is only wearing the helmet at night and we are taking it off during the day. Aunt Robin drove James and Mom to the hospital. It's very large and we definitely got lost. Robin stayed in the waiting room while Mom was able to gown up and go back for the procedure. Not only did they not sedate but t...

Friday, April 22nd, 2022 So our GJ popped again! This time we made it to 5 months.  In the afternoon, we took James for a ride in the car to run some errands. When we got home Mom lifted him out of the cart seat to the massage table to do his care and change his diaper. She noticed his GJ button was leaking through his shirt. As she lifted it up she saw that the balloon was deflated sticking out past his stoma, so she pushed it back in and taped it down with gauze. Time to go to the ER! Unfortunately GJ is not like a G-tube. A GJ can't be replaced at home and requires interventional radiology to do a fluoroscopy. We were out of town and had to have this replaced at a hospital we were not familiar with. After asking several locals everyone said that Wolfson Children's would be the best option. Overall, it was the same situation... Mom explaining what a GJ is to ER nurses who should already know, teaching the radiology techs difference between the two extensions and showing them ...

Thursday, April 21st, 2022 James had his first experience sitting outside in the lanai. It's the only way to be outside in Florida. James tried on different pairs of sunglasses. We also witnessed a bald eagle try to get into an osprey nest and then chase each other around. In the evening it was just Mom and James, since everyone else had prior engagements. James practiced his clapping while listening to some classical music. He got to chill on the couch with Mom which never happens at home because our family room is located upstairs. Such a simple joy, to lay on a couch next to your baby. For us it's a huge deal and felt like vacation. This trach/vent life makes you appreciate the little things. 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, April 20th, 2022 Dad left early in the morning for Jersey. 🛫 When James woke up we noticed that his red spots had been getting worse. Comparison photos below over the past few days. Mom immediately contacted the local orthotic office who also sells starband helmets. We were directed that any office listed on the Star Band Kids website would be able to get us in and make an adjustment on the helmet. Well unfortunately that was not the case the local office "did not feel comfortable". Not because he is on a ventilator because they didn't even know that. They just didn't want to be responsible for messing up the helmet. They suggested mom contact a Hanger Clinic, which are nationwide. Of course they also deny us since our helmet is not from them. However a doctor from the Hanger Clinic called Mom back and said that she would see him but only with an order from our original office in Tampa and even then she wouldn't guarantee making a change to the helmet....

Tuesday, April 19th, 2022 James watched Tommy do tricks for treats. He enjoyed a puppet show from Juju and cuddled with Aunt Robin while he had a break from the helmet. Every morning Mom moves James from the Pack N Play to the chair where he takes his morning nap. You have to quickly disconnect his circuit from the ventilator, pick him up out of the Pack N Play and then pull the circuit out of the netting to reconnect. We do this because we cut a hole through the Pack N Play netting to prevent rainout (drowning).  Just learned to clap this week! Tommy trying to figure out how to steal the pacifier! First time with a Rubber Ducky! 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...