The Journey of James Weston

Sunday, September 26th, 2021 We took a break from the sing-a-long songs and Mom introduced James to Led Zeppelin. 🎵🎸🎶🎙️ Mom tackled cord management for all of James' equipment. This involved zip tying a lot. A ton of zip ties! First, connecting the ventilator rolling stand to a 3 tiered craft cart, then zip tying a surge protector power strip to a 3 tiered craft cart, then wrapping up all of the charging cords and plugging them into the power strip. This got all of the cords off the floor.  We noticed that James' gauze around his G-tube was blue and smelled really bad. These are the symptoms of pseudomonas. Typically you would find this at the trach stoma site but James did not have an issue there, only at his G-tube stoma site.  James thought wearing a hat was funny living in Florida. Holding his lion so gently. Next to James is a preemie onesie. The first one he ever wore. James is now wearing 9month-12month clothing and growing every day! Mom froze some of James' t...

Saturday, September 25th, 2021 Today is Juju's birthday and Notre Dame football! 🥳🎈🎉 ☘️🏈👏! Mom went to pick up James' antibiotic and refills at CVS. It turns out that several of his medications (like almost all of them) have some type of issue where they cannot be filled. A few examples are 1) His lansoprazole (Prevacid) needs to come from a compounding pharmacy which CVS is not. 2) His sodium chloride can only be picked up from a Hospital Pharmacy. 3) His calcium carbonate is only carried at select pharmacies. 4) His multivitamin, melatonin, and Mylicon (gas drops) can be purchased over the counter however the dosage and strength is different and would require James getting twice as much quantity and his belly. So we are trying to get these approved to go through insurance instead of out-of-pocket. So not only do we have to contact four different doctors (pediatrician, pulmonology, gi, endocrinology) to refill James' 11 medications, we now have to go to four different...

Friday, September 24th, 2021 Our new (M, TH, F) nurse started today for day shift. Completely different personality from the nurse who does Tuesdays and Wednesdays but still seems more experienced than the first one we had. Of course there are always things that we need to let them know that we do differently. For example some nurses are trained to disconnect the circuit anytime for any reason whether it be to untangle something, clean out a piece of the tubing, or to empty water. For James he has a peep of 12 and if anyone is familiar with how the lungs recruit peep it is super important not to disconnect James unless it is absolutely necessary. We already have to disconnect James or what we call "pop him off" when we put his circuit through the crib railing to avoid him getting rain-out. This happens twice a day. We also disconnect him when we do a trach change which is once a week. Any other reason to disconnect the circuit is really just unnecessary. We all have peep, our...

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 ...