The Journey of James Weston

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...

Tuesday, July 6th, 2021 Updates/Changes: Today his 3 bolus feeds ran continuous. He did not spit up today.  After the Doctor did his rounds the Discharge Coordinator stopped by to go over nurse staffing for overall discharge information. But at the door was the next person waiting for us to finish talking. It was someone from OT to work with James. So because there was a lack of social acuity we needed to cut our very important conversation short to accommodate her looking at her watch. 🙄 James then had OT/PT. He slept through the whole thing. He really seemed like he had received strong sedation but he hadn't. He was lethargic. It was a little odd. Maybe James was just trying to get out of physical therapy. 😉 In the afternoon James was a kind of inconsolable still showing withdrawal symptoms so we gave him a dose of Tylenol. He then slept great from 4:30pm to 10:00pm.  Evening:   We gave James a "PICU bath". This is where we just wipe him down with basically baby wipes...

Monday, July 5th, 2021 At 5am smiling in his sleep. 3:30am: A random RN practiced doing a heel stick on James. Blood was everywhere. She tried three different sticks and then ended up going into the hall and asking an RT how to do it. And he let her know she needed to take the cap off the stick. 🤯 The whole time she's just telling James, "you're fine" as he is crying and screaming. 😢 She never apologized. Mom asked why an RT wasn't doing this and she said they were all busy.  It was awful to watch. 4:30am: X-ray is here! WTF 😒 James is supposed to be sleep at night. The RN sent them away to come back later during Day shift. Today was a slew of tests and people! X-ray of wrist to follow up on rickets Echo for the heart for pulmonary hypertension Bedside Report with Doctor and Team - discussed concerns with overmedicating, failed home vent trial, previous Doctors order from the NICU, and possible length of stay (which sounds like we could be here for another 6 mo...

Sunday, July 4th, 2021 Some things that are different in the PICU compared to the NICU: Constant code blue and code grey alarms going off over the loud speaker. In the NICU, we just had a fire drills. On James' ventilator the PEAK pressure alarm has a threshold set to max out at 60. Well in the NICU it was set to 85. So this is constantly going off. It is loud AF. They are saying that they can't increase this threshold because it would be dangerous for overexpansion of the lungs. Well for 3 months the NICU had it set to 85. Mylicon (gas drops) are PRN but have to be ordered from the pharmacy in individual doses. In the NICU, we just had a box so it was easy to administer. PICU suctions A LOT and never use saline bullets to flush.  In the PICU, Trach changes are mandatory on Tuesdays for everyone. Accommodation wise the NICU far surpasses the PICU in terms of sleeping arrangement and bathroom accessibility. However the PICU does give breastfeeding moms three meals a day. Mom wil...

Saturday, July 3rd, 2021 First off, Happy Birthday Tommy! James' older brother turns 5 years old today! He is a rescue so this is the date we chose! Dad took charge today so mom can take a little break. Life in the PICU is slightly different. It’s smaller. The crib for James is MUCH bigger. The bed for Mom and Dad is MUCH smaller. We can eat in the room. We have movies access (mostly Disney, which is perfect). Several more nurses and doctors to help James.  It’s overall been very accommodating. Dad had a good time taking charge. He got invited to join rounds. We got approved for Q4 vs Q2, so they only need to mess with James every 4 hours instead of 2.  We had an early morning xray at 4:45am. Not the most fun way for James and Dad to wake up.  Dad did many diaper changes. Trach ties. Gave his Meds. Cloth wipe bath. Held the pacifier (and figured out a modified rig - only works temporarily). Held James. Even did his first Outfit change for James.  We attempted the tri...