The Journey of James Weston

Wednesday, February 2nd, 2022 Today James had a pulmonology appointment in the afternoon so we needed to cancel physical therapy. We had several things happened during our appointment. 🫁 ⬇️ We decreased James' PEEP from 10 to 8! This is a huge win! We breathe at about a 5. Just a refresher...  PEEP is pressure in the lungs at the end of each breath. In mechanically ventilated patients, PEEP works against passive emptying of the lung and collapse of air sacs. Collapse of air sacs can lead to incomplete inflation of the lung on the next breath and reduced oxygenation. 🗣️ Our Pulmonologist wrote another order for a Passy Muir Valve that we should have received by now. In the last month we made no progress with speech therapy, because we were waiting to get the Passy Muir Valve from our DME. He was curious why our DME medical supplier never even contacted us with an update about it in the last month. So his office called the DME while we were there and they said their excuse was that...

Tuesday, February 1st, 2022 Mom got a nap in the morning while Dad showed the nurse how to put James in his bouncer. James is turning all the way around now and can reach the parts! 🧮 Mom and Dad were able to step out for little bit in the afternoon while our nurse watched James by herself. They swung by Dad's office to start sorting and cleaning out rooms. He needs to move out by the end of the month. Please let us know if you need any office furniture or Cutco. 😉 "Strong Man James" was one of his nicknames while he was in the NICU, given to him by a male RT that swore by onesies with zippers. James is grabbing everything he can. He even tried to flip the bathtub full of water. 🛁  Tonight he was cranky because he was so tired. He didn't get his 3rd nap today so by 7 o'clock bath time he was very fussy. We put him in some space travel pajamas 🚀 that he got from Christmas from Juju and Aunt Robin. They are amazing quality called Moon and Back by Hanna Anderson....

Monday, January 31st, 2022 In the morning, we went to James' Helmet Appointment where he was evaluated for a helmet to help with his flat spot, which is called plagiocephaly. They did a 3D scan and determined that he was definitely a candidate for it but we are coming in on the late side. Honestly it's such a shame that we are just getting started with this now. His flat spot started after he got his tracheostomy at 3 months; however, he was not stable in the NICU and was having several BPD episodes every day. At 6 months, James could have received a helmet in the PICU because he was stable and not having BPD episodes. Several babies get their helmet before they even get discharged. Even after discharge the pediatrician never brought up the possibility of getting a helmet. After 8½ months in the hospital it should be a standard suggestion knowing that almost all babies will have a flat spot. This should not fall on the parents to have to research and bring these things up! So t...

Sunday, January 30th, 2022 First thing's first, forgot to update on Friday our pediatrician called to let us know that we could wean James' sodium chloride. She discussed with the endocrinologist and because of his labs they made the decision to wean from 4ml 2x/day to 2ml 2x/day. He was within range but on the high end. They would like us to repeat labs and 7 to 10 days. 💉 This is great news! 📰 We called the Aquarium and found out that it's only the 1st Sunday of the month! So we decided to go to the Lowry Park Zoo instead. Once you pay you're allowed to go the rest of the year for free, so Dad's plan is to do this every weekend. 😂 Mom made strawberry and banana pancakes 🥞 and sausage for breakfast while Dad did some morning eye patch and bouncer time with James. Grandpa Don also had a morning Facetime with James. 🤳  Side note: James had recently been pulling at his GTube. He is super fast and strong. We have to keep our eye on him 24/7. The other night he tr...