The Journey of James Weston

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...

Saturday, April 10th, 2021 Although our Primary Nurse is getting experience with another baby today down the hall, we seem to have a very nice nurse today who is letting Mom be hands-on. Pumping is going well. Mom is down to 5 pumps per day (from 8) for just over 40 oz/day. We have quite the stash, mainly because with James being a micropreemie he has never really taken a whole lot. The most has been about 15 ozs a day (almost 2 oz/feed). Oh and we heard you can get $2 an ounce on the black market...🤔 💰 After speaking with the doctor today we are going to try to increase his expiratory pressure to help decrease his CO2. To understand more about PEEP, this is a great video showing an EMT inflate real lungs.  Mom is trying to keep James awake during the day so in between pumping, washing bottles, diaper changes, meds, training on trach care, and 3 hour nap holds, she is talking to him about what life will be like at home. Although all of these pictures show him sleeping, today he w...

Friday, April 9th 2021 Today our Primary is back after a long stint of random nurses! James has thrown up/spit up at least 5 times. Sometimes it's just breastmilk and other times it's blue because of the morphine.  After speaking with the Doctor we increased the time the feed will run, so the 56ml bolus feeds will run over 45 minutes instead of 30 minutes. That has helped James so far! James is ROCKING in the NICU like a Boss. Here is a clearer photo of the onesie. 🤣 Ventilator Settings: FiO2: 32 PEEP: 10 Rate: 40 Tidal Volume: 30 Latest 4am CO2 Blood gas:  Yesterday it went up to 77.1 from 68.9 and this morning 74.9. Besides the throwing up, James has the shakes, little tremors in his arms. Pain Meds before moving to PICU: Clonidine 2/21/2021 5 mcg q 4 hr Morphine Sulfate 1/2/2021 0.12 mg q 3 hrs Discharge from PICU: clonidine 20 mcg/ml susp, 1 ml 6 mcg 0.3 mL, GTUBE, q6hr (interval) morphine 50 mg [0.05 mg/kg/hr] + syringe, empty sterile 50 mL 1 EA + D5W 45 mL 45 mL, IV, 0...

Thursday, April 8th, 2021 James was due date today! He is now 3½ months old!  Update: Changing diuretics to only once a day. The doctor is feeling like his body is compensating for the changes the diuretic is making. For example, low chloride showed in his general chemistry. He had a very high blood gas showing his CO2 level in the 80's at 4am and still high at 11am. We are back to his baseline now although this is still high overall. James continues to have these mini bronchospasms where he turns red, bears down, and holds his breath. They are essentially asthma attacks. So we have added an albuterol treatment (prn) along with the pulmicort. He has had some of the biggest bowel movements he has ever had in the last 48 hours! Mom held James for 2 ½ hours this evening. He handled it well and then towards the end desated although he was peacefully sleeping at the time. Dad read the Dr. Suess Birthday Book. 1am-3:30am Update: Mom woke to find James' alarms saying "APNEA"...

Wednesday, April 7th, 2021 Today is Pop-pop's Birthday! He would have been 69 today. James Weston was named after his Pop-pop and will carry on the legacy of the great name. His middle name, Weston, means "from the Western town". James was born in Tampa Bay, on Florida's West Coast. Update: His weigh in last night was 3340grams (7lb 5oz). So he lost 10 grams. His feeds were changed from bolus feeds at 56 mls during the day and then continuous feed at night of 22 calories/ 22mls an hour. James has been making sounds shown in the videos below. There is a leak around his cuff. When he had his ET tube that was a 3.5. The trach is a 3.0. There is a cuff filled with 1ml of saline it goes around the trach. So there is some room around that cuff but also we think when James has these little broncos spasms he bears down and squeezes some of the water out. We had a couple of RTs check the cuff yesterday by taking out the saline and measuring it and it was not measuring 1 ml bot...

Tuesday, April 6th, 2021 What day is it? 🤣😩😪 Before the trach change Morning Update: First trach change happened around 12:15pm. It went well and the doctor said his stoma looked good. A whole slew of people came to watch although at first it was hard to find a single RT. Then all of sudden the room was full. Interesting how we have such strict rules around covid but then allow several people to be in a patient's room just to watch a procedure.  First withdrawal episode 🤔: He was taken off of the paralytic, sedation, and pain med immediately after the trach change and then put on methadone and clonidine for pain. Immediately he threw up, brayded, desated, and was angry. Mom had to go out in the hallway and call for help. She was told "he is fine". Since he never throws up she felt like these were withdrawal symptoms already, but was told it was too early. Interestingly enough they decided to start him back on morphine (pain) and dexmedetomidine (sedation) right after...