The Journey of James Weston

Thursday, June 24th, 2021 Measurements: Weigh-in: 5970 grams (13lb 2oz) Length: 21.06 inches Blood Gas: 58.7mmHg Updates: Care Conference is scheduled for Wednesday, June 30th at 12pm. We need to get everyone on the same page and start talking about going home. Get James on the trilogy for trials and talk about vent settings. 🫁 James now pees very far. We've had to change the bedding 5x in the last 2 days. It's like a fountain! ⛲ At this point we have removed all IVs due to failing to flush. 💉 He has not had any Morphine since Tuesday. We weaned again on the Methadone. 💊 James has been doing a lot better overall with his BPD episodes and has been able to self soothe. He is getting good stretches of sleep through the night also! 🤩 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@gmail.com

Wednesday, June 23rd, 2021 Change/Updates: New Doctor today Vent Settings: Increase Tidal Volume from 53 to 60 Decreased PEEP from 13 to 12 Continuing on Automode for 2 hours on Day Shift and 2 hours on Night shift. May increase length of time. James is doing really well with it. His G-tube had a bloody gauze last night and also leaked through his onesie and blanket. The contact at the doctor and surgeon who said that this was okay due to this new G-tube replacement causing some trauma. So we just need this to heal and get a little more snug around the button. Overall he had a really good night of sleep. Mom just held him a lot today while trying to figure out painful health insurance/ Cobra/ Marketplace/ Medicaid information. The worst! Is anyone really knowledgeable with this stuff? Mom and Dad did the trach change today. In the evening, James sat up in his boppy and looked around the room while listening to Disney lullabies. P.S. You can email James your love and support as often as...

Tuesday, June 22nd, 2021 Weighed in last night at 5995 grams (13lb 3oz). We did a PRN morphine for pain at 9pm and another at 8am. He had a good stretch of sleep last night with only a few wet diaper changes. His Os got down to 25% with a low heart rate and some good waveforms on his monitor. We breathe 21%, which is room air. He loves sticking his tongue right now and bringing his hands to his tongue. Showing off his karate moves Sometimes we use a t-shirt rolled up to hold his pacifier in. 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@gmail.com

Monday, June 21st, 2021 Normally we would weight and do measurements on Monday morning but all of that was done on Sunday due to the surgery being scheduled for 11am. Below are the new numbers: Weight: 5950 grams (13lb 1oz) Head Circumference: 15.84 inches Length: 21.06 inches 5:45am UPDATE: The morning started off at 2am with trying to get an IV with no success. We tried for 3 straight hours. Eight tries between 4 folks who tried on the hands, wrists, feet, scalp, and arms. 😢 This is even with a PRN morphine dose. Mom held his pacifier while he wrapped his little hand around her finger. Sometimes we had 3 people holding him down, sometimes only 2. Two is not enough; Mom thought we already learned this lesson the last several times! Now we are waiting on the PICU PICC team to get here at 7am so that the NICU PICC team can borrow their ultrasound machine. James' feed stopped at 3am, so they wanted to get his IV in at 3am to start TPN and lipids. However since he is "older...

Sunday, June 20, 2021 Morning :   James had a big poop last night to bring in Father’s Day the right way! 💩  Dad got to spend last night in the NICU and wake up to all of the random (somewhat unnecessary) stop bys.  One visitor tapped Dad to wake him at 7am to simply say “Do you have any questions before the surgery tomorrow?”   Seems like that question could’ve waited until dad was awake or anytime later in the day since the procedure isn’t until tomorrow at 11am.  🤷‍♂️   James got his bloodwork done today instead of tomorrow due to the surgery. It came back at 63, which is great. One of the blood tests didn’t take, so they need to do another one. Dad has been holding James for three hours, so they will wait until James wakes up from the cuddles. Evening: Huge diaper around 10:30pm. James started with a BPD episode, but his diaper was clean so Mom tried suctioning and venting him. Normally as soon as you hook up the 60cc syringe you hear a large ...

Saturday, June 19th, 2021 James has a good night but we think that the week has caught up with him so today he was very sleepy. He is resting up for surgery on Monday. He started out being held by his RN, then by Mom, then we tried him in his seat, then laying on his side, then the boppy.  When we were prepping him for his bath, taking off all of his gauze and tape off around his G-tube the balloon shot right out. The balloon probably deflated the day before but it was being held down by all of the gauze and tape. Mom immediately grabbed the rub rubber catheter (you can see tape to the wall behind James' head). It is a 16FR so much bigger than the hole you would think, since the button that you will be getting on Monday is a 14FR. However when Mom stuck it in it pretty much fit. The RN proceeded to wipe down James since he still needed a bath, but we knew that wasn't going to happen now in a tub! We waited to hear back from the charge nurse, nurse practitioner, and surgery on w...

Friday, June 18th, 2021 James had a pretty good night, which means Mom also got some sleep. In the morning we noticed that his G-tube was leaking. No matter how much gauze and tape we were using it kept leaking out. So we had to postpone his feed until the doctor could take a look. We switched doctors again today. 👩‍⚕️ The doctor spoke to surgery and they said just to make sure we had enough water in the balloon, (and that it wasn't saline), and to put more gauze on. We added a little bit more water into the balloon.  Currently surgery is scheduled for Monday at 11:00am! He will have about a week of recovery and be on pain meds (probably morphine). James will recover in the NICU but need to go back across the street for surgery. 🏥 Today was also photoshoot day with marketing! 📸 Mom and James were used as models for the new Trach training brochure for the hospital. Pictures were also taken with the RT but James the star! 🌟We did examples of where it looks like the RT and the Mom...

Thursday, June 17th, 2021 Weigh-in: 5750 grams (12lb 10oz) Blood gas: 57.5; was 68 which is great! Todays was a day of Firsts! James had tastes of prune juice for the first time and he loved it. He has been getting 10mls of prune juice through his G-tube to help with bowel movements. However today we tried putting a drop on his lip and he used his tongue to lick his lips. One of the perks of being in the hospital for 169 days and watching your baby's every move is that you don't miss anything.  James also got to sit in his new chair that was given to us by a nice day shift nurse. It's a Fisher-Price  Sit-Me-Up Floor Seat and he loved it! 🥰 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@gmail.com