The Journey of James Weston

Monday, March 13th, 2023   In the morning, our Early Intervention therapist still came by the house. We put James on the HME and he scooted around the house. He was showing the therapist around, pointing to different things, and even brought her into Dad's office.🚪 It was so cute! On Friday, Mom had a video consultation with both Early Steps therapists to just go over James' current condition and to help complete some paperwork. 👩🏻‍💻 James was asleep for most of that and when he was awake he was grumpy because he wasn't feeling well. His 6 month re-evaluation is due soon.  James is back on the vent after 5 hours off, because his respiratory rate was too high. 😕 No oxygen though. 👍🏻 Maybe he was working out too much when the therapist was here. 🤷🏻‍♀️ We wouldn't be surprised if there was another week of this. James is a fighter! 💪🏻 James fell asleep in Mom's arms. He normally doesn't let us hold him too long and squirms to get on the floor. Since James...

Sunday, March 12th, 2023 We took it easy today and didn't do much on family day. We took James off the ventilator for a few hours in the evening to watch a movie upstairs, but he was definitely going back on the vent to sleep. It was important that he was getting around the clock humidity. 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

Saturday, March 11th, 2023 Today Dad had to go to a wedding so Mom and James listened to Miley Cyrus's new album Endless Summer Vacation on Disney+. [Video below] James really hears the music, dancing slow and fast, and knowing when that beat drops. James had to stop what he was doing to get his groove on! 😆  We kept him on the ventilator again to him the much needed humidity. Mom needed to suction him a lot. He really hates when we suction his nose and we have to hold him down pretty good. With RSV being upper respiratory suctioning his nose gives him immediate relief. We also decided to do Albuterol with his Pulicort treatments twice a day, along with CPT, and a random sodium chloride treatment here and there. He played with a number puzzle and we are really working on counting now that James knows his colors. Supposedly the order to teach children is colors, shapes, letters, and then numbers! James is very curious and will look at you for help asking you to explain what he is p...

Friday, March 10th, 2023 So we had to cancel PT at home this week as well as therapy today at the hospital. We let everyone know it will probably be another week of this. James watched Snow White and danced to the orchestral music 🎶. He was so focused on making sure the dwarfs were going to save her from the witch. It was adorable! In the afternoon James video chatted with Tommy, Juju and Aunt Robin. 🤳🏻 While James was getting much needed rest Mom used the opportunity to make phone calls. The goal was to get in with a new pediatric GI. Mom needed to get a referral from our pediatrician faxed over, and get his medical records transferred. Mom called the pediatrician and after being transferred to several different people someone asked, "and why are you wanting to switch doctors?". Like depending on the answer they may not approve of us switching. 🤷🏻‍♀️ It seemed like a personal question versus something necessary that they needed to ask. Then when speaking to our current ...

Thursday, March 9th, 2023 📦 Something that Mom forgot to mention earlier in the week was the issue we had with our DME. Last week when we received the call from ENT saying that we had a decannulation date set (for today) Mom was in the middle of confirming our supply order for shipment with our DME via email. Mom was excited about the good news and let our DME account manager know that we had a decannulation date scheduled, and that if successful we would be able to stop respiratory supplies at some point in the future. Well it turns out that the account manager ended up just canceling ALL supplies, all together that day. All respiratory supplies and all enternal (GI) supplies! While at the hospital Mom had followed up with her to ask why we had not received our order yet (that we had just confirmed for shipment).  On a completely separate topic, our orders have been getting later and later each month. Originally when we got out of the hospital we were receiving them on the 12th. ...

Wednesday, March 8th, 2023 Today was supposed to be the day we were going to come to the hospital for the overnight sleep evaluation before the decannulation. Instead we are already here. Yesterday, the ER said they were going to contact our ENT and Pulmonologist to let them know James was admitted so that our procedure could be cancelled. Guess what? Mom received a call from hospital registration today for details on checking in. So not only did ENT not communicate back to the hospital that we were in the hospital they were also calling us on the wrong day. We were supposed to arrive at the hospital TODAY not tomorrow. They had different information, saying we were only coming in Thursday, not the night prior on Wednesday. So it would have been a mess anyhow! 🤦🏻‍♀️ James slept pretty good overnight and only woke up once, which is when we suctioned his nose. Mom only needed to get up 4 times during the night to suction his trach. The nurse was pretty good about being quiet and handli...