The Journey of James Weston

Saturday, October 2nd, 2021 Finally a day that Mom and Dad can enjoy James by themselves. Sometimes it's nice to have privacy and not have a nurse in the room with you 24/7.  James typically wakes up around 7am, which means it's still dark outside. Mom moved him to her air mattress to get some morning snuggles. On a side note, this is the 3rd air mattress that doesn't hold air. Come to find out from the internet, this is a thing that just happens, they aren't meant to be used daily. So we ended up purchasing a collapsible bed that folds in half with a real mattress that we can just move to the side during the day.  Dad started off the day with going to the office to run the PB&J for Tampa Bay nonprofit, then ran a local personal growth meeting in the afternoon before driving around giving out sandwiches to the homeless. Mom held down the fort at the house and had James listen to a lot of different music. He gets really emotional listening to Leon Bridges, it's a...

Friday, October 1st, 2021 James is 9 months old!!! (5½ months adjusted!) Wow time really goes by fast! We've now been home for 3 weeks. Before you know it, James will be having his first birthday party!🎈 Crazy, right? 😮🥺 Today James had his first skills assessment! We had a 2 hour Zoom screening with Early Steps to determine where he is at for social, communication, motor and self-help skills. Early Steps is Florida's early intervention system that offers services to eligible infants and toddlers, age birth to 36 months, who have or are at-risk for developmental disabilities or delays. Early intervention supports families and caregivers to increase their child’s participation in daily activities and routines that are important to the family. Positive early learning experiences are crucial for later success in school, the workplace, and the community. Research shows that children’s earliest experiences play a critical role in brain development. James automatically qualified d...

Thursday, September 30th, 2021 Finally hear back from RT at 3:00am, after calling a few doctor's offices to find no emergency on-call line. She directs Mom to change out the circuit even though we just put a brand new one on this evening. So Mom had to go wake up Dad upstairs for him to come down because this is definitely a two person if not a three person job. The reason being there are multiple things to hook up at the same time and we cannot have James off of the ventilator for that long. We end up switching out to the new circuit and the disconnect alarm stopped going off. Thank goodness! So now it's 3:30am in the morning, dad is going back to bed and mom needs to do the milk and James' meds. The nurse arrives at 7:00am so only a few hours of sleep until then for Mom. So now we used our last circuit and we are supposed to change that weekly. Our insurance only gives us three a month. We have not received our second month order yet from our respiratory DME so we are sti...

Wednesday, September 29th, 2021 Today James had a fever, chest retractions (where his lungs are over working), and a lot of yellow secretions. We gave him two doses of Tylenol in the afternoon and debated whether or not to call the doctor. The thing is, they were most likely going to have us come in or go to the ER. We wanted to wait until after the Tylenol kicked in. He ended up feeling better after the 2nd dose at 7:30pm. His "Low Minute Volume" alarm was going off constantly. Sometimes an alarm doesn't mean what it says. LMV typically means there is a leak in the circuit around his trach. So Mom inflated his trach to the full 2MLs, but this didn't help at all. She looked at the FB group for answers and it looked like it was very common to have this alarm constantly go off on this ventilator. But randomly out of nowhere? It didn't make sense. Either way we needed to change the parameters on the vent to stop this alarm from going off. James was satting fine with ...

Tuesday, September 28th, 2021 Sputum culture results came in: Heavy Growth Acinetobacter baumannii complex Heavy Growth Klebsiella oxytoca Light Growth Mixed endogenous microbiota present He is being treated with AMOXICILLIN-POT CLAVULANATE. STRENGTH : 400-57 MG/5ML James had an ENT appointment today. They did a scope and decided to increase his trach length so it will be an even longer custom trach. Cigna isn't even covering the cost of the trachs, because they don't see them medically necessary. They run $500 a piece for non custom. Can't wait to get rid of Cigna. After the morning appointment our Tues/Wed nurse worked with Mom on getting James up and out of the crib. She was also a really big help traveling to and from the appointment. It shortened the time in and out of the car by 20 minutes. 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 W...

Monday, September 27th, 2021 Our M, TH, FRI nurse came back for her 2nd day. We will see, but the morning didn't start off so great. Mom & Dad (mainly) needed to tell her what to do because what is the point of having a nurse if we are doing everything... 🤷🏻‍♀️🤷🏻‍♂️ The issue is that she does not agree with the way we care for James. We are a few simple rules. Do NOT disconnect his circuit unless it's absolutely necessary. Do NOT check the water in his GJ. There is no need to "change out" the water. We also have a routine with doing trach care in the evening. She disagrees with this. (There is also a language barrier). If a nurse cannot agree with these then it's simply not going to work. Right now, we still don't have anyone on Nights or weekends. Not sure if we will actually want someone here all the time. There is no privacy at all. P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video m...

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...