The Journey of James Weston

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

Wednesday, June 16th, 2021 NICU Neighborhoods 🏘️ Each RN has 2 babies on the 2nd floor of the NICU. The rooms are separated in groups of 4, which are called neighborhoods. These neighborhoods are color coded. We are currently in Blue. So 2 RNs and 1 RT usually oversee the whole neighborhood. When your RN is busy with another baby or goes on break, the "buddy nurse" in your neighborhood is there to help.  Alarms & Monitors 🚨 Each room has a monitor where the RN can also pull up their other baby's stats side by side. This should be coming up but a lot of time does not work. When a baby is bradying this sends an alarm to their phones to notify them that the baby's heart rate is dropping below the threshold. Unfortunately their phones do not alarm when a baby desats (oxygen is dropping). There isn't even a threshold where it would ever go off. Unless an RN is staring at their monitor, no one is alerted. The Problem 🙋🏻‍♀️ James no longer bradys when he has BPD ...

Tuesday, June 15th, 2021 Today's Morning Stop-ins Physical Therapy - We ended up asking PT if they could come back later. James was a little irritated. GI Consult - Answered a lot of Mom's questions! Doctor - No changes. Physical Therapy - Worked with James on moving his arms, legs, and neck to full extension. Discharge Coordinator - Mom let her know that our discharge will probably be later than we originally thought. Speech Therapy - Worked with our primary nurse as Mom pumped. James did great with the oral stimulation. James is approved for surgery! Now we are just waiting to be scheduled! He will be getting his hernia repair, circumcision, and a new G-tube button. He will go over to the PICU for the surgery and be placed under anesthesia. James will recover back in the NICU. He projectile vomited today around 1:30pm. He had his formula feed at noon and then we did a bath right afterwards. James was all clean, new sheets, new blanket, sportin his brand new onesie from his Pr...

Monday, June 14th, 2021 James had kind of a rough night and morning. He seems irritated either from the wean of Methadone, reflux, and/or gas. Sometimes though he is just being a baby and wants to be held!  Today the hospital was getting inspected by the Joint Commission. We've been hearing that they were coming for months but didn't know the day. James was one of the two chosen to be interviewed by them and so was his nurse. We all passed! Lol I think we threw them off with Timmy the Trach Doll sitting in the swing. He needs his own room. Joint Commission standards are the basis of an objective evaluation process that can help health care organizations measure, assess and improve performance. The standards focus on important patient, individual or resident care, and organization functions that are essential to providing safe, high quality care. To give you an example, here are a couple of memes about the Joint Commission and how nurses typically feel about their visit. Lol Ove...