The Journey of James Weston

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...

Monday, April 5th, 2021 Middle of the Night Update (MOTN- for all the pumping mamas): Last night his PEAKs were in the 50's and 60's so they ended up doing a PRN of meds to calm him down. Around 2am, several RTs were in the room suctioning him pretty often to see if they could help. Morning Update: The ENT group stopped by to let us know that the trach change will happen tomorrow. They took a look at James to assess him and said the trach looks good! This morning the IV team changed his PICC dressing because it was peeling off. They are NOT going to try and find another vein for an IV. At this point, all meds can go through the PICC line. When they need to run through the diuretic they will just stop the 3 IV drips (paralytic/ sedation/ pain meds) for 5 minutes to do so.  Since the trach change is scheduled for tomorrow we will be heading back to the NICU afterwards! They will then start to wean James off of the paralytic, sedation, and pain meds. James has been on morphine sin...

Sunday, April 4, 2021 Morning:  James is needing another IV line put into his right arm due to the the one in his left arm went bad. 😞 They cannot use the port in his leg due to the sedation medications not being able to cross paths with the diuretics. Overall, James is reducing his inflammation slowly. He had a large bowel movement last night, which was good.  Here is James little arm getting ready for the new IV.  Update : Unfortunately, after two pokes (one in his right arm and his right foot), they couldn’t find a stable port for the IV 😢. So, now they need to try on his left arm and see what they can find. So many pokes and needles on our little James.  After a failed attempt in his left arm too, they decided to give a different form of his Diamox (to help with his acid-base balance) that he could get through his feeding tube instead of his vein. They think his veins won’t flush due to the blood flowing to all the other parts of his body, plus the me...

Saturday, April 3, 2021 Update:    James wishes mom a Happy Birthday today!!  She’s been incredible during the past 100+ days and deserves to celebrate her special day. How did James celebrate?  With keeping his PEEP at 10, his FIO2 at 40, and a cute round head that everyone keeps complimenting! 👶  Overall, things are staying pretty steady around here while James stays sedated and paralyzed until they do the trach change (anticipating Monday). James shows us if he’s uncomfortable with an increase is heart rate or blood pressure. He shows us if he is having any complications with an increase in his Peak (one of the Ventilator numbers).  The medical staff in the PICU have been ON TOP OF IT!  An alarm goes off and they are in here very quickly.  They also come check in ever 15 minutes if there isn’t an alarm to just check his temperature.  The sleeping arrangements for the parents isn’t the best, but the care for James has been great....

Friday, April 2nd, 2021 Bed is tilted up to help his lungs. He has a lot going on. Update: James is on a lot of meds! See photo below. In addition, they have started James on Lasix because of fluid retention and edema. James is also getting a treatment of Mucomyst (via the nebulizer) which is added with albuterol to thin and loosen mucus. They are going to continue G-tube feeds at 14 ml/hr with EMB fortified to 22kcal.  We are holding on weighing him since we would need to move him around for that. It will be interesting to see how much weight he has gained after this week.  Vent Settings FiO2: 45 PEEP: 10 (after the x-ray, they saw he was overinflated so they lowered this)  Rate: 40 Tidal Volume: 24 PEAK: 29 (sometimes up to 68 at night!) FAQs - Understanding Life with a Trach Why did James have the tracheostomy and G-tube surgery? In a nutshell, the tracheostomy was done for James' brain development not for his lungs. Although there are some slight improvements to the ...