The Journey of James Weston

Saturday, July 23rd, 2022 Dad got Mom a hotel for the night since next weekend he would be out of town. It's hard going 2 weeks in a row on little sleep with no down time. Even though James is more stable now if he is disconnected from the ventilator we don't know how long he can breathe on his own and it's not something we just want to test out without a Doctor's supervision. Dad was experiencing the same thing with the pulse ox not working. Yesterday Mom had asked one of the Facebook groups ("Premies on Oxygen") what the issue could be and would the DME replace the cable. Unfortunately that Facebook group is a joke, so in order to get actual answers Mom needed to post in the Moms of Trach Babies group. Immediately everyone said their cables would die and it was a common issue. So while Mom was out running errands (which is always just getting something for James) she called the DME' answering service and left a message. After talking to about 5 different...

Friday, July 22nd, 2022 James rash is still pretty bad. Mom gave him 2 ice packs (that were thawed out but still cool). James is also teething while dealing with this rash. He still loved getting tickles from Aunt Robin though. Mom noticed that the pulse ox machine for the 2nd night in a row was just alarming the whole night. It would read straight flat lines as if he was disconnected or came off his foot but James was sleeping, not even moving and everything was secure. Mom suspects it is the pulse ox cable. We also tested it on our fingers and it wasn't working.  Juju, Aunt Robin, and the pups headed back to Jax in the evening after making several amazing meals for us and bringing James lots of new toys. 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

Thursday, July 21st, 2022 New GI Doctor  In the morning Mom and Juju took James to meet his new GI doctor. It is a little further of a drive but so worth it. The office staff was friendly and organized. We did wait an hour to see the doctor but that is pretty typical with GI for some reason. He was very friendly and knowledgeable. The doctor could clearly see that James' GJ button needed to be changed and that this one was too big. The doctor said he would try and get us scheduled with Interventional Radiology, but that in the last six months they have had a change in management and have been refusing to schedule people. However at the end of our appointment we met with his head nurse and she assured us that she would get a scheduled and if not she would push back until they did. What a refreshing change! He also wanted to make a change to increase his Prevacid from 2ml once daily to 3ml twice daily. He did a great job explaining the benefits of prevacid and was able to answer Mom...

Wednesday, July 20th, 2022 Family got in pretty late last night. We started James on Benadryl around the clock. ⏰ The rash looks like it is getting worse! When he moves the red spots turn into raised white spots. James got to play with some new toys that are actually pretty vintage. These were Mom's toys from the '80s! James has a workbench with tools and a magnetic stackable sphere. He loved the hammer maybe he will be a general contractor! 👷🏻‍♂️ We were scheduled for with our new GI Doctor tomorrow! That was fast! Juju will accompany Mom on the appointment tomorrow. 📅 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

Tuesday, July 19th, 2022 Emergency Evacuation ☣️ The A/C guy came at 8:30am and about 20 minutes later he comes running down the stairs saying, "You need to get the baby out of the house now. We have a freon leak". Mom responded, "He is on a ventilator with oxygen!", letting him know this is huge deal and it's going to take a while. The A/C guy looked shocked as he didn't realize what we all had going on. He reiterated that we need to get him out. Mom's immediate thought was how is going to affect the oxygen tanks? Not only do we have a large oxygen concentrator and an oxygen tank in the living room but we have eight more oxygen tanks in a closet underneath the stairs. 😱 There wasn't any time to discuss the dangers of freon and ask questions. We needed to just take the advice of the professional and evacuate. Mom immediately went into Dad's home office interrupting his speech saying, "We need to get James out of the house, it's an emerg...