The Journey of James Weston

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...

Sunday, June 13th, 2021 Updates: Started Robinul back at half dose due to too many secretions. Received PRN dose of Morphine due to wean of Methadone. He was very irritated. Auto Mode increased to 2 hours during the Day shift and 1 during Night shift. This weekend James started Calcium and Sodium Phosphate due to the healing fractures recently found. We found that when these combine they form an insoluble white solid. James had another bath today. His Primary sung him Head, Shoulders, Knees, and Toes and held him while he was going through withdrawal. Mom and Dad came back from their staycation. In the evening we had a family sleepover. First time all 3 of us slept in the same room. Probably won't do that again since that also means no one got any sleep. 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

Saturday, June 12th, 2021 Updates: On Monday, James will be getting an echo to check for pulmonary hypertension. If he is cleared then we'll be able to move forward with scheduling him for a hernia surgery. At this time they will also do his circumcision and put in his new MiniONE button for his G-tube. James has been doing excellent on his auto mode!! Twice a day for 1 hour each (or maybe 2 hours sometimes 😊) Mom and Dad were able to spend sometime together this weekend outside of the hospital (but still visiting everyday). For day shift, his primary nurse dressed him in a cute outfit she bought him. James ended up having a big diaper and got the onesie dirty so he spent the day in his shorts. Cute little shorts! We all agree there is nothing cuter than pants or shorts on a little baby! Mom and Dad were happy to know that his primary nurse and favorite RT had a great day with him! They stopped by in the late afternoon evening so they can also be there for a shift change. We knew ...