The Journey of James Weston

Sunday, April 25, 2021 Morning :  James wanted to break Dad in last night and this morning and make sure that he gets a taste of what Mom gets to experience daily. James had spells almost every hour.   What’s a Spell? :  Heart rate drops to 80 or below. Oxygen drops to 80 or below. James holds his breath and turns red, sometimes purple. He sometimes has tremors with his arms. He cries silently, and sometimes makes yelps through his trach. Imagine watching a baby choking...that’s what the experience looks like.  Dad asked the doctor this morning what are the long term ramifications of these spells. Her response was that there’s not enough evidence to show that short spells (a few minutes) have any long term affects on the Baby’s development.  She said that longer spells (upwards of an hour) could lead to some issues and challenges. Luckily, James has been recovering from his episodes fairly quickly. It’s usually several minutes.   Unfortunately, thes...

Saturday, April 24th, 2021 James lost 10 grams last night, but overall is up for the week average. We are not making any changes today to limit the variables. Right now we are pretty sure James' BPD spells typically start with a dirty diaper. The sooner that diaper can get clean the sooner it is over. Currently James is on bolus feeds via a farrell bag, which allows him to vent. He has pretty bad gas so Mom is going to do her best with being dairy-free, just to see if that could help. She was a vegan once so it shouldn't be too hard. Lol Our primary nurse was back today and she is excellent at having James try new things! This morning James started off at 7:15am with a pretty bad BPD spell to welcome all to shift change. Mom then held for 2 hours. Afterwards James had some tummy time on the boppy and we turned his crib so he was facing the big window to get some natural light. He has really been into his pacifier (a soothie) and now begs for it. The picture collage below is sho...

Friday, April 23rd, 2021 Today James had several episodes, although his chart won't reflect that. Nurses only chart what they want or have time for. So today the chart will show as having only 2 episodes. 🙄 How do we know this? The Charge Nurse came into the room and asked the nurse, "How many episodes did he have today?". Her response was, "Two, well I charted two". His actual BPD events start at 9am, then 12pm, 1pm, 3pm, and 6pm. This is how many times we needed to increase the PEEP to 14. This is how many times James had lung spasms bad enough and long enough to have several people come in the room to "help". Five is how many BPD episodes James had today, during day shift. It really is as simple as looking up the history log and seeing how many Bradys he had and when they occurred. Seems much more accurate than manually entering these in. It really blows our minds that tracking statistics isn't automated by now. Mom held for 2 hours and then he...

Thursday, April 22nd, 2021 James spent the day recovering from last night. A few BPD episodes today, but for the most part rested. James feeling his lips He lost weight again last night. Now down to 3710 grams. Mom spoke with USF genetics about scheduling the whole exome sequencing genetic test. This will be a blood test done on Mom, Dad, and James. If you'd like to learn more about whole exome sequencing or genetics in general this is a short easy to understand video: This evening James gained weight 3950grams (8lb 11oz).  Changes today: Increased Albuterol treatment to be every 6 hours. We added back gas drops. It seems like his episodes were all due to gas. He had an episode at 9pm, 12am, 2:45am, and again at 9am on Friday morning. These are the same times as his feedings.

Wednesday, April 22nd, 2021 James was upgraded to a Big Boy Crib from an isolette (open neonatal incubator). Right before the change we gave him a bath. Basically that consisted of just wiping him down with a wet washcloth.  He did tummy time on his boppy. At first he wasn't sure if he liked it and then he slept on his arm for about 3.5 hours. 12am update: James had an episode from about 12am to 1:30am.  Cause: Possibly dirty diaper and he had been sitting up all day, so he needed a position change. Resolution: Changing to a clean diaper, changing position to a tight swaddle with arms tucked and laying him on his side. Also the wet wash cloth on his head helped a little for a brief moment. Also increasing his PEEP to 14 while having an episode immediately calmed him but he kept retracting heavily. 🤷 2:30am - Might as well pump now! 3:30am-4am update: James had a pretty bad BPD episode.  Cause: Dirty diaper? Resolution:  Increasing PEEP to 14 4am: Trach care 4:30am...

Tuesday, April 20th, 2021 Today James had a rough morning... desating, bradying, gasping for air and sounding like he was drowning. It didn't feel like a BPD episode, it sounded more like James couldn't breathe and was choking. He started retracting again. Mom interupted Rounds by asking for someone to come in and help. He was sitting up in his boppy and could not be calmed down. 2 nurses, 2 RTs and a Doctor came in. They briefly increased the PEEP to 14 (this is something that they will do if he has a really bad event). James started coming back up. Today we switched Doctors again. This is one we have worked with the most over the past 4 months.  ENT came in for a consult because James' leak had been so large. This morning up to 62%. The ENT Nurse Practitioner took a video of James being so vocal with his trach and sent it to the ENT Doctors to get their opinion. Shortly after we were informed that they would be upsizing his trach from 3.0 to a 3.5. The doctor also got an ...

Monday, April 19, 2021 Morning :  James had another weight loss last night, which is good as he’s releasing some of the fluids and inflammation. AND ... we want him to get to 5000g so we can begin on the home vent (Trilogy) sooner then later. He’s at 3730g right now.  James had a quick bath and wash today before getting to wear his new favorite Michael Jordan “Jumpman” Onsie! (It’s a little big, but 🤷‍♂️ 🤷‍♀️ ).  After the bath  Per Dad’s suggestion, we wanted to do some Tummy Time on the Boppy and switch some things up with his positioning. And ... he loved it!  Dad also read last night in the book “The New Father” about newborns looking at a mirror. So, one of James favorite RT’s was able to find one and let him see himself for the first time.  Due to James also having the need to release some gas, the doctor approved Mom’s suggestion for a gas drop.  Dad suggested Taco Bell, but they went with Mom’s suggestion. 🤦‍♂️ 🤦‍♀️  The Physi...

Sunday, April 18, 2021 3am:  Poor James was having several BPD spells after Dad took over for the night. The nurse was very helpful with helping Dad feel comfortable with the uncomfortable situations. James would calm down for a little bit and would then have a spell. And then calm down ... you get the point.  😓  The Lasix is helping. James dropped 180g, which is good to reduce some of the swelling. His blood gas also showed a decrease in CO2.  What’s a spell? ...  Sometimes his arms and hands would tremor and he would turn red.  Other times he would hold his breath and turn purple. Other times he opens his eyes wide and moves like crazy as if he’s choking.  😔  What helps? ...  We are still navigating through this and figuring it out.  Last night, farts 💨 seemed to help a bit.  He was passing a lot of gas and it seemed to relieve him a bit.  Diaper change seemed to help for a moment. Sitting him up with a FIRM pat ...

Saturday, April 17th, 2021 So there may have been some miscommunication... This doctor is now saying he thinks that James' BPD spells are withdrawal symptoms. Mom was originally told that it was too early to have symptoms by one doctor and then was told we weren't even weaning yet by another doctor....? The problem is we don't think anyone did the calculation to see if the IV drip he was getting in the PICU is more or less than the dosage he is currently getting vis his G-tube. WTH? Was he just given an arbitrary amount based on his weight? A nurse told us her opinion that she thinks these are both withdrawal symptoms and BPD episodes. The withdrawal > causing irritability > causing the BPD spells. Maybe? 🤷🏻‍♀️🤷🏻‍♂️ There are not enough BPD groups out there. James continues to have back to back BPD episodes with bradys, desats, and the sweats. He has also had several massive diapers which might be a combination of the new feed schedule (breast milk and formula rot...

Friday, April 16th, 2021 Today we noticed that James had pretty bad chest retractions. We also had a new Doctor today (well, not new but they change every couple of days). The only real variable is that we made a couple of changes to his ventilator settings over the last 2 days. The main change was that they increased his i-time to allow him to have a longer exhale. He did fine while he was sleeping.  We had the doctor take a look and he decided to make a change to the ventilator settings. This worked well for about 30 minutes and then James started retracting again. We contacted the doctor. He decided since James had a good x-ray, good blood gases (some of the lowest we've seen), his heart rate and oxygen looked good, but he was still having severe retractions that maybe he could just use an extra dose of morphine. Are we just chasing the gases? The morphine seemed to do the trick for the rest of the day. That also meant that James was just sleeping all day. 5am Update: He had a ...