The Journey of James Weston

Wednesday, April 28th, 2021 Today we changed Doctors, this is another great Doctor who we really like and have had since we've been back in the NICU. Overall James had a good day today. We had a new nurse because our primary nurse was floated to a different department. However this new nurse is one of the best nurses we've ever had, definitely top three!  James did not have too many events during the day. Just one at the beginning of the day shift and one towards the end. Our nurse today showed us that we can vent the G-tube with a syringe. Game changer! This gave James instant relief by releasing the gas from his stomach.  James started off the morning with physical therapy. He had a new PT instructor today, who was able to show Mom some new ways for James to do tummy time across her lap. After PT, Mom held James for 2 hours. Then Mom and Dad gave James a bath. This was his first tub bath since the trach and G-tube surgery. He did really well and fell asleep again!  Afte...

Tuesday, April 27, 2021 It's the end of April already! When did that happen? James has a really good day in part due to his Primary Nurse being here. He did some tummy time and showed us he could lift himself up without using his hands. Very strong! 💪 One episode this morning around 9am, tummy time, awake time with his mobile and interaction, trach change, and nap.  The trach change went well with his Bovina Flex 3.5. Mom was assisted by the RT while Dad watched. The RT removed the trach and Mom put in the new trach and then attached the oxygen to the new suction catheter. It's pretty intense but this time, no tears. The hard part is always being ready for potentially needing to go to Emergency Step 2 (putting in the smaller 3.0 trach if the 3.5 doesn't fit) and Emergency Step 3 (bagging him if the 3.0 doesn't work, while calling 911). 😱 🆘🚑 Yes this is a once a week ordeal. #HelloAnxiety No change to his weight.  He had a better night with a 4 hour stretch of sleep ...

Monday, April 26th, 2021 Changes today: After a 1am weigh in last night at 3840 grams, losing an ounce. He ended up gaining tonight at 3940 grams (8lb 10oz). He measured at 17.5 inches long. We have made some vent setting changes by decreasing the Rate from 30 to 25. The reason for this is because his blood gases recently were good. Also we may not have mentioned but a couple of days ago we switched James from morphine to methadone. In a few days, we will begin weaning him off. We did trach care at 1am along with weighing him and changing his clothes. This morning around 9am we needed to draw blood for a CBC panel and for the exome sequencing test. They tried drawing it from an artery in his left arm and that was horrible to watch. Eventually they got someone who was really good at IVs to come in and take it from his head. We knew eventually they'd use those veins, so that is a bandaid on his head. We did the trach tie change right after his 4:30pm episode. Charting of BPD episodes...

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...