The Journey of James Weston

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 ...

Thursday, April 15th, 2021 Stop-ins and events for today Doctor Bedside Update - Made some additional changes to the ventilator settings. James decided that he was going to have a massive BPD spell while the Doctor was in the room. It lasted a while. Essentially at the end he had a very loud diaper. So that BPD episode was because he was having a bowel movement. This is why we may need to look into possibly changing his feedings if he isn't tolerating. Social Worker - Stopped by to see how Mom was handling everything... so it was a long chat. NICU Doctors/Parent Liaison - Stopped by to let us know that if we want additional training or to use the trach doll again that we have a contact here in the NICU that would be glad to help. Speech Therapist - Stopped by to say that she heard James was doing well with his pacifier. She suggested that mom practice with James daily, by putting the pacifier in milk and let James get used to the sensation. This is the beginning stages of feedin...

Wednesday, April 14th, 2021 *Sorry for the late post.  #exhaustion James enjoyed his first swing experience and his first tummy time in his boppy. Mom also assisted the RT with the first trach change today! After cleaning the stoma, Mom pulled out the trach and reconnected the oxygen after RT put in the new trach. We then put on the trach ties. It was very stressful and emotional Mom and Dad both cried afterwards. If you'd like to see the process of changing a trach, this video is exactly the process we follow. The only difference is that James is very active baby when upset. We will be doing this weekly on Wednesdays! James gained weight and is now 3650 grams (8lbs)! The Doctor decided to changed some of his ventilator settings by increasing Tidal Volume and lowering his Rate.  Current Ventilator Settings FiO2: 28 PEEP: 11 Rate: 20 but then we increased to 30 (originally was at 40) Tidal Volume:  35 Unfortunately James did have several brady episodes. Some while he was c...

Tuesday, April 13th, 2021 Lots of people stopped by today! 👩🏻‍⚕️🩺👩‍⚕️👩🏼‍⚕️🏥👩🏽‍⚕️👨‍⚕️🥼👩🏾‍⚕️🏨👩🏾‍⚕️👨🏻‍⚕️ ENT Check-up - The nurse practitioner stopped by to take a look at his trach and stoma, since we've been hearing a leak. Essentially she said we could go up to 2mls of sterile water in his cuff, but that staying at the 3.0 bovina is the right fit. Genetic Counselor Touch Base - Mom met with a Genetic Counselor to discuss the concerns we have regarding James' shorten long bones and his recessive osteogenesis imperfecta gene to see if there is a correlation. She is going to look over all of our records and get back with us. We discussed having Mom and Dad doing a ex ome sequencing swab, which is a genetic test used to identify a heritable cause of a disorder. 🧬 Trach Camp Training - Mom and Dad went through a trach training course. They learned how to do trach care, cleaning the stoma, changing split gause pads, changing the trach, what to do in an emergency ...

Monday, April 12th, 2021 Morning Update: so the blood gas that was done at 5am after his bronchospasm came back at 80! So another one was done this morning at 8am came back at 59.7, which is much better! Here is a video of him at 4am after this Bronchospasm.  This morning a new primary doctor did an assessment on James. She also went over all of his notes with the previous doctor and got an update on last night.  James had a speech therapist stop by and had his first assessment. He did really well sitting up taking his pacifier. She put fresh breast milk on the tip and he went to town. Each time she gave him the pacifier with more milk on it he was more open to receiving it. He would open his mouth a little versus piercing his lips. He is learning! She said he sucked for about 19 times at the most before taking a break. He is still learning how to hold it in himself. We are going to make this a daily practice so we can get comfortable with sucking swallowing and breathing. The...

Sunday, April 11th, 2021 No real changes with James today other than his CO2 went down to 65.2 from 74.9. Dad spent the day talking, reading, and holding James. He also watched the trach tie change at 3pm. Evening Update: Since James had such a good calm day with Dad of course it was an eventful evening for Mom... He gained a 40 grams... 3380grams (7lb 7oz). He started around 8pm with having two Brady episodes and a desat into the 50s. No one came in. Mom changed his diaper once he calmed down. He then threw up, so Mom changed his onesie and blankets. James is now a big boy and is moving his arms around a lot when he's awake. Unfortunately this popped off the circuit (trach unattached from oxygen tube). You hear a loud hissing sound which means oxygen is not connected. Mom reconnected it immediately. Needless to say she won't be sleeping tonight. Mom swaddled James with his arms tightly inside, but 3 different times he escaped. #BabyMacGyver After that his g-tube leaked right t...