The Journey of James Weston

Friday, April 30th, 2021 Overall James had a good day and another great nurse who was very familiar with trachs and g-tubes. It was great to have James active during the day. A few episodes but very short lived. 9:00am Doctor Bedside Report & Hands On Increased the pressure support above PEEP from 20 to 22. (We think this has helped today to recover sooner.) We think James may have a UTI so he needed to get a urine culture done. Unfortunately that involved getting cathed. It will take a few days on the results. Increasing his feeds to 90ml (2 oz). Tomorrow we change Doctors, one that we've had in the past. Wonder if she'll recognize James. Lol 10:00am Tummy time on Boppy with baby mobile and YouTube Lullabies 11:00am Sterile Procedure Urine catheter placed for culture.  So far by 6pm no bacteria has grown, but we will want to wait the full 48 hours. 1:15pm Physical Therapy PT stopped in to work with James. He was held for a short bit, focusing on him sitting up and holding ...

Thursday, April 29th, 2021 Last night weighed in at 4050 (8lb 14 oz) Tonight 4105 grams (9lb)! Today's events: 9am Physical Therapy Goal is to keep his arms and hands forward. Either with a rolled up towel or by pressing at his shoulders forward. We also need to put together a day time schedule of activities James can do to help with light cycling. 10am Bedside Update with Doctor James officially has hernia. The Doctor had Mom feel it. It makes a very loud squishy sound when you push the intestinal loop back into the abdominal wall. So James will definitely need to have surgery, but they want to wait closer to discharge so that he is bigger. We started microweaning the methadone in the afternoon. 1pm Speech Therapy James had several episodes during this. He really does love his pacifier and milk but was having a hard time due to the lung spasms. Goal is for Mom/Dad to hold James daily. Try to have as much skin to skin as possible. Even if this is simply James' head on our arm. ...

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.