The Journey of James Weston

Thursday, November 11th, 2021 We really focused on tummy time, sitting up, and rolling over today. Our nurse who will now be our Primary Nurse will be working M,W, F and occasionally Saturdays. She really stepped up today and helped Mom work with James on the floor. It's a little tricky with all of the tubing and his GTube button. We especially want to avoid rainout which is hard when James is downstream from the ventilator being on the floor. Recently he has been very active with his feet, rubbing them together and using his toes to take off his pulse ox. 😂 When we hold him in our arms he also pretty active with his hands, rubbing our faces, pinching 🤕, "hitting" our arms, giving us high-fives. He is a bundle of energy ready to go! James makes strides every week! He loves being naked after his bath! P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the...

Wednesday, November 10th, 2021 So James is now 7.4kg (16lb 5 oz)! He has now doubled his weight from when he had his custom trach put in. Kinda ridiculous that we don't have a new one at this point. Today is the last day with this nurse. Yes Mom counted down the hours. We also had a stop by from the staffing agency's Clinical Nurse for James' 60 day assessment and Mom's Client Coordinator so she could meet James and get a better understanding of where the nurses would be working. We been told we have a pretty nice setup with an easy case, so nurses would want to work here. They also have an adorable baby that just smiles at them all day. 👶🏻 In the afternoon, James had his 2nd Physical Therapy lesson. Unfortunately at this time he was in the middle of a nap and Mom had to wake him up. He wasn't about the PT this time. He cried a lot and did not tolerate tummy time. He did do well with his sight and sound coordination. The PT would shake a rattle in one hand, let hi...

Tuesday, November 9th, 2021 Today our Tues/Wed nurse got on Mom and Dad's last nerve. Too many things to complain about with her. She claims to be "nurse of the year" for the staffing agency, yet ignored her patient all day while she was on her phone. After 2 months of training has actually become worse at her job. Overall she is lazy, incompetent nurse with a severe lack of social acuity who violates HIPAA daily and puts James at risk. Tomorrow will be her last day with us. "Those that can, do; those that can't, talk about it."  On another note, James rolled over on his stomach by himself in his bed. This is the reason why we need to keep the side railings up higher now. Posting this here in case this helps anyone else. With the LTV if you are seeing a high respiratory rate and yet the patient looks fine, check for water in the circuit (inhalation tubing). Once dumped into the humidifier chamber, you'll here a moment of silence and then the RR will be n...

Monday, November 8th, 2021 James had his monthly pulmonologist appointment to receive his synagis shots (to protect against RSV). During the appointment we had a few things happen! Getting his nebulizer treatment prescriptions switched over to the pulmonologist's office Our Pulmonologist reached out to our NICU Speech Therapist regarding getting a swallow study. So we ended up getting a referral for a PO evaluation. This is the first step before a swallow study. After discussing James' stability and the fact that he is only on . 5% liters of oxygen, the pulmonologist agreed to try him on a PEEP of 10. It was originally at 12. Good thing Mom and Dad pushed for this! Next step would be to wean the pressure support. We also received a script to get a blood test done to check James for allergies. James received two synagis shots and his thighs. He absolutely hates the shots and cries so bad! Lastly they checked his end tidal CO2, which looked good! It was a very long appointment. W...

Sunday, November 7th, 2021 No nurse, she is still off this week. Dad started off the morning watching The Neverending Story with James. Dad was not a fan. 😂 But this was Mom's childhood. James can't wait for Tommy to come home so he can practice flying.  Mom also made her first slow cooker recipe, Butternut Squash Soup. We think the slow cooker will be super helpful in trying to cook dinner while being a full time ICU nurse. If anyone has any slow cooker/crock pot recipes they'd like to share, please send them to jameswestonabramowitz@gmail.com. Ideally low carb, but we'll see how long that lasts... Tomorrow is James' Pulmonology appointment to get another 2 synagis shots. 💉 We are also going to ask about going down on his PEEP. 🤞 The boys are napping. 💤 Baby feet! He is getting tired. James wearing matching sweatpants with Daddy. Mom's view from her bed. Ventilator Oxygen and heart rate. P.S. If you read the blog and aresupporting James through his journey...