The Journey of James Weston

Monday, July 12th, 2021 Weigh-in: 6320 grams (13lb 14.9oz) - James now weighs more than Tommy! Well let's hope so, Aunt Robin has been feeding Tommy some gourmet meals! Measurements: We will ask the nurse tomorrow to get measurements. At 5am Mom woke up to alarms to suction and change James' diaper. She noticed his sock was off and when she went to put it back on that it was damp. Feeling around she saw that we "fed the bed", which means his med port was open and his feed was being pumped directly onto his bed. This is the 3rd time this has happened since being in the PICU. This also means he did not get breastmilk or any medication during that time period. The nurse thought she may have been in the room around 3:30am to change his diaper. Well his feed runs at 40ml/hour so to calculate we know we definitely lost 60 mls of breastmilk being pumped directly onto the bed. Also there were chunks of breast milk and bile on the blankets. This means James was also pushing ba...

Sunday, July 11th, 2021 Morning:   James had a solid night. Only a few small episodes, but the night nurse did a great job at helping James and giving Dad permission to sleep for a few hours.  12am - small episode. Needed boost 2am - rectal temp compared to arm pit. 98.4 vs 97.4. WAT score was a 4. Decided to rub his head and use pacifier to console instead of morphine. Just gave regular dose of clonodine and methadone.  5:45a - WAT score of 6. Just did he clonidine and that settled him.  Our daytime nurse asked in rounds if the 6 WAT score is appropriate due to several check marks getting him to a 2 (sweating and yawning). The consensus was that those are withdrawal symptoms and if James shows one more getting him to a 3, they will offer morphine if he’s not within a few minutes of his scheduled meds. Dad requested to go through the drop down menu before morphine (diaper, suction, vent, and position change) to see if James can self soothe.  Dad is starting to g...

Saturday, July 10th, 2021 James had a good day, 3 episodes that Mom was able to console by either changing his diaper, burping, or holding. No need for PRN morphine. Our Day shift nurse was pretty rough with James and decided it would be a good idea to do oral care with a toothbrush. She scrubbed really hard on his gums. The toothbrush was then covered in blood and James was gagging. After Mom calmed him down she sat him up in his boppy with the help of an student RT in training. James immediately projectile vomited on himself and the bed. We ended up changing his onesie, his trach ties, and the bed sheets. The nurse removed all of the old bedding along with the purple bumper used for physical therapy. Super odd... Because when Mom asked where she had put the bumper, she said "I'll just get you some more blankets". No that wasn't the question. Pretty sure she took it. Wtf. Some people are just miserable and should not be pediatric nurses. Juju continued the puppet sho...

Friday, July 9th, 2021 Overall this has been the worst day for James withdrawing. All we can say is Poor Baby. Inconsolable most of the day. Our day shift and night shift nurse was super helpful and recognizing that he was definitely withdrawing. He received 3 PRN Morphines, a Tylenol suppository, and a glycerin suppository. Mom spoke with the PA and the doctor on call around 10:30pm about James' medications. Update/Change: Increasing Clonidine, keeping methadone the same. They originally we're going to wean the methadone today. Juju came to visit from Jacksonville. She got caught up in traffic on i-4 and unfortunately could only make it for the last hour of visitation today. She brought her puppets and because of the Tylenol James did not have any withdrawal symptoms while being held. 🥰 Post Withdrawal Episode P.S. You can email James your love and support as often as you’d like. Mom and Dad read these emails to James as they come in. We all love them! JamesWestonAbramowitz@g...

Thursday, July 8th, 2021 Update: Increased prune juice from 10ml to 20ml to help with bowel movements.  Didn't time to weigh or do measurements on day shift or night shift. We will have to get that tomorrow. Great Nurse on Day Shift and one of our favorite NICU RTs just happend to be floated to the PICU! It was so nice for James to see a familiar face! It was a pretty rough morning and we ended up giving him a glycerin around noon and he had a massive diaper around 2pm. We also gave James a bath and did his trach care using the Nystatin powder. Grandpa Don and Dee came for a visit in the early evening. Mom held whenever she could to comfort James from his withdrawal episodes.  In the evening, James ended up having a terrible episode where the pulse ox wasn't reading at all and he turned purple. Unfortunately when the pulse ox is not reading it does not alarm. 🤯 Mom noticed CO2 went up to 100 so she went down the hall to go get someone. His rate also went up to 100. He look li...

Wednesday, July 7th, 2021 On Thursday and Friday we will have a few visitors in the PICU! Yay! Today we had stop-bys from Child Life, PT, Speech, ENT, as well as the doctor and the team coming by for rounds. It was pretty much back to back speaking with someone from 7am until 1pm. Needless to say going 13 hours without pumping wasn't the plan! Mom and Dad did the trach change for the first time in the PICU in front of the Director and the PA. Every time we get a little bit better. It was a little tricky in that the ventilator was on the opposite side that we were used to, so we changed the sides we normally stand on. In an actual emergency we will just need to GO and it won't matter what side we prefer. So that's why we try and change it up each time to be comfortable doing it from any direction, left-handed, right-handed, and eventually by ourselves. The hospital won't allow only 1 person to handle trach care; however in real life this is what will happen. Update/chang...