The Journey of James Weston

Monday, September 12th, 2022 James made it through the weekend and was feeling better. Mom decided to hold off on calling the pediatrician. Maybe James' immune system could fight whatever he had going on. James played with his new car toy and inspected the wheels thoroughly. Recently we purchased a new circuit cover on Etsy. Our first one which was blue was from Amazon worked great at preventing rainout but was really meant for an Adult CPAP machine. It weighed 4.9oz and it pulled the trach and James' stoma. Mom had reached out the other trach Mom's on FB for recommendations. This new one weighs only 1.8oz and doesn't add any unnecessary weight while still preventing circuit rainout.  Etsy Store: RedRabbitGoods The GIF shows how James was able to move from the W position (almost kneeling) to sitting. Super important! Mom trying to help James do tummy time. James refuses to use his arms to hold himself up.  P.S. You can email James your love and support as often as you’d...

Sunday, September 11th, 2022 We took James to his first trip to Target and buybuy BABY. Our goal was to buy James a hat (a cap), since we didn't get him the first one he tried on. 🧢 First was buybuy BABY and we walked out spending less than $100. Yay! 👏 After finding a blue baseball cap we ended up walking out with a new huge bathtub, wipeable bibs, baby lotion for eczema! At Target, we got him his first Lovevery Toy which was a little car 🚗 and a stick figure driver! This is the only Target in the area that carries the Lovevery brand. Hoping to get James more! The GIF is when we tell James to "hold on tight" when getting him in and out of the car.  P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com

It has been one year since we have been discharged from the hospital on September 10th! 😁 What's so interesting is that two of my closest trach mom friends had babies with extremely long NICU stays who were also discharged around the same time! ❤️ 🎶 Do you remember...When we were discharged in September? We would soon get a DME vendor.. While chasin' the clouds away. 🎶 😆 Here is an official update on James! He is 20 months (16½ months adjusted) and 20 lb. Technically once he reaches two we're not allowed to say adjusted anymore. 🤣 I believe the last update on Facebook was in February. Well since then a lot has happened! First off, we let go of all of our nursing in March. To make a long story short, it came down to incompetence, laziness, and James' safety. It was pointless in having them because I was doing everything, and they were simply charting what I was doing. Training and retraining nurses who have over 10 and 20 years of experience was ridiculous. We are ...

Saturday, September 10th, 2022 Today marks our 1 year anniversary of being home! 🏡 James performed several songs for James on the guitar, the James Weston Lullaby, his own original, and a classic mashup. 🎸🎶 Please check out the other blog post listed as "Official Facebook Update" with a summary of what has happened since February! P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com

Friday, September 9th, 2022 So James starting biting himself on his arm. Is this a normal phase? 🦷 During the day things were great! James played with his toys and explored. Then the evening took a turn... At around 6pm we contemplated going to the ER due to his respiratory distress. 🚑 It seems to always be on a Friday evening once our pediatrician has closed and we are reliant on the ER (and night shift, on top of it 🙄). James ended up having a fever of 101, high respiratory rate, high heart rate, increase in secretions, needed an increase in oxygen, and was having lung retractions. The increase in secretions and increase in oxygen started on Wednesday when Mom was up with him the entire night. We really tried to think about what they would do at the ER for him. Because of the lung retractions they would probably do an x-ray, but it wouldn't show anything because we knew this was a trach infection. They would do a sputum culture and it would come back that he was colonized with...

Thursday, September 8th, 2022 We had a pretty bad night last night. All throughout the night starting at around midnight James needed suctioning. His oxygen was dropping, yet it was saying that it was getting a really good reading. So we knew the issue was not the pulse sox on his foot. Every time Mom suctioned she wasn't getting very much up but yet she could feel it in his chest and in his back. So even though James was in a dead sleep mom had to sit him up and pat his back. This is called chest PT and we haven't really had to do this since the NICU. Typically after a lot of padding you can bring up secretions to his trach and then suction. There is a good chance that James has a trach infection. Mom increased his oxygen from .25 to .4. We didn't get very much sleep, well at least mom didn't. Every hour she was up either increasing oxygen or suctioning. You can throw in a couple diaper changes in there  We had rescheduled physical therapy to be earlier today than norm...