The Journey of James Weston

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...

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...