The Journey of James Weston

Thursday, September 23rd, 2021 Today we did not have any nursing but we did have our first outpatient GI appointment. Our M, TH, F nurse needed the day off today and will be starting on Friday for her first shift with us.  The GI appointment was very similar to our pulmonology appointment on Monday, in that it was very overwhelming to get to the hospital for the appointment and it really felt like it could have been a telehealth instead. The waiting room was packed full of kiddos that were not medically complex. We waited to get called back as ventilator and pulse ox alarms went off constantly. Must have been 120° outside here in Florida. James was drenched in sweat and very upset. Mom and Dad were also soaked just getting in and out of the car. The only change we made at our GI appointment was that we increased his feeds from 37/hr to 38ml/hr. They wanted to get his height and weight which means getting him out of his car seat attached to multiple pieces of equipment to lay him do...

Wednesday, September 22nd, 2021 Today we took our nurses with us to our 2 appointments! It was helpful having a 3rd person for getting in and out of car, house and setting up the stroller. It's still a 30 minute ordeal just to get into the car. It's a good 2 hours total for the day every time we are going to an appointment. It's a huge ordeal! Medical Stroller Appointment: We discussed options to customize a stroller that would be handle to handle the weight of the LTV ventilator and oxygen tank, as well as other things like the suction machine, pulse oximeter, and feeding pump. Unfortunately it does look more like a wheelchair but it will be a safer option so that we don't have anymore stroller flips. This should take about 2 months. She was also going to look into our medical crib, but that is an insurance nightmare. Did we mention we have Cigna? 2nd Pediatrician Appointment: We let the doctor know that James started breaking out in the rash again all over his torso m...

Tuesday, September 21st, 2021 Was a little rough of a morning, James woke up around 3:45am for the day! Mom finally got him back to sleep around 6:00am. 🥱 We had a nurse show up today at 7:00am for Day Shift! Yay! We did not have a meet and greet with her. But she ended up being a really great nurse and she would be able to work on Tuesdays and Wednesdays. At 8:00 a.m. we also had another nurse show up for a meet and greet. That nurse would be able to do Mondays, Thursdays, and Fridays. So we'll have Monday through Friday day shifts covered! For the first few days a nurse is new mom is basically teaching them about James and training them on how to do things. Even if the nurse has had a trach and G-tube baby for over 10 years... every baby is different. Not every patient has inline suction, or is mobile, or needs the ventilator 24/7. Also sometimes nurses are taught to do something and never understood why they do it and it is just incorrect. Change is hard, especially when you...

Monday, September 20th, 2021 Mom continues being the photographer... Well our Day Shift nurse canceled. This was just a backfill for a one time only scheduling. Supposedly she got into a car accident ("supposedly" because after being in Recruiting for so long you find that people lie). She called from an international number and left a voicemail. Mom could not understand her voicemail (listened to it several times) because her English was that bad. She then proceeded to text Mom (again incomprehensible) as well as photos of a car. This would have been super dangerous to be training a nurse with that much of a language barrier. She would not be starting with us.  In the afternoon, we had our pulmonology appointment. Of course loading up the car and unloading the car is the most stressful part about the appointments. When we get there the waiting room is packed and full of little kids and their parents. Not one person is on a ventilator which is interesting. 🤔 As we waited in ...

Sunday, September 19th, 2021 If there would have been Primary RTs just like RNs then Vanessa would have been his Primary Day Shift RT. He lights up and has always responded with smiles! 😊 She stopped by for a visit with her Mom, who has also been following our journey. It was so nice to have these visitors especially since James hasn't met much family yet! We put James in the swing and he tolerated a whole hour and then some! This week we have nursing scheduled for Monday and Tuesday both Day and Night Shift between 3 different nurses. We shall see! We also have 4 appointments scheduled between Pulmonology, Medical Stroller, Pediatrician, and ENT.  Photo below shows his Farrell bag changed from yellow to green. A quick search in the Trach FB group to find out that this is actually okay. At first it was concerning. P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see ...

Saturday, September 18th, 2021 Dad put together the swing we got back in January! Thanks Amy Hill! James loved it. It swings both side to side and forwards and backwards. There are a bunch of songs and sounds for him. Other than that Mom and Dad continued to try and put supplies away and get the trach cart organized. Currently we are having a tough time hooking the humidifier to the 3 tiered cart. Right now the living room looks like a construction zone. Tools are everywhere. We bought a projector so that we could watch movies on the wall. We live in a two story townhome with our "TV Room" upstairs in a loft. Currently James is downstairs in the "Living Room" which originally was just books, a piano keyboard, and guitars with a sitting area. P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️ P.P.S. T...

Friday, September 17th, 2021 We ended up having our first Day Shift nurse today. It's a small world because she just happens to be from Dad's hometown in New Jersey and we figured out that her daughter graduated 2 years after him at the same High School. He pulled out his yearbook and quickly found her there! 😆 This nurse definitely had more experience than the previous nurse. She helped Mom the whole day with organizing a cleaning and replacement schedule for all of the medical equipment. The nurse was able to help clean up so that Mom could hold James. We are still working on a list of nurse duties so that they can be as helpful as can be. In the beginning, Mom will want to continue doing all of James' care so that she can show them how to do things correctly and safely. Video below shows James putting pacifier back in himself. He has complete control now! P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video...