The Journey of James Weston

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...

Wednesday, September 7th, 2022 Tomorrow we are scheduled for another pulmonology appointment. But just to be sure we would see the Doctor, Mom called the office. Sure enough they said he would not be in and we would be scheduled with the Nurse Practitioner. We decided it would be best to just reschedule since we would really like to move James forward with trials off the ventilator. It would be great if everyone was on the same page, but that is not the case. It's a shame that Doctor's offices do this nowadays... They meet with you and then transition you to see an NP instead. We would like consistency. Considering this is one of the only Doctors we really like, we would love to actually meet with him. So we rescheduled for next week! But it's better than waiting another month! Our EI therapist came over and we discussed what some of the appropriate play would be at his age. So we are working on things like James acting out a nursery rhyme using his hands and playing consec...

Tuesday, September 6th, 2022 Today James had physical therapy. Our focus was to get James on his hands, bearing weight through his shoulders. However he wanted to show us how fast and far he could go. His preferred method of travel is to lay on his side and push on the ground with his feet. He can go pretty fast! While James took his morning nap Mom posted in several Facebook groups supplies for donation, because honestly it's taking up a lot of room. We have an excessive amount of suction catheters. At first we thought we would need these but we ended up not using open suction. Maybe once James has trials off the vent but we honestly have thousands and could donate several boxes. Mom reached out to local special needs daycares, charities, and hospice but either received no responses or they were not interested. You wouldn't think it would be hard to give away free medical supplies. 😵‍💫 There ended up being a few caregivers who were interested in a few boxes. So Mom shipped t...

Monday, September 5th, 2022 Nothing new really for today. James spent some time in his walker/bouncer. Mom raised the seat to Level 2 since at Level 1 he was almost kneeling. However Level 2 was too high and James could only tiptoe. After speaking with our physical therapist about it she said he would do better at a Level 1 so that he could work on pushing himself into standing position. He explored more of the kitchen. Mom tricked him by giving him a picture of a wooden spoon; not an actual wooden spoon. He was confused. 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