The Journey of James Weston

Saturday, April 2nd, 2022 Since Mom slept at home, Dad had the shift at the hospital. This was the best sleep Mom has had in a long time. Texts from Dad to Mom (our charting 😂): 9:00am  "Overall a good night.  We both slept from 9:30p-1a. Then the LOW PEEP alarm was nonstop. I redid the circuit setup - put him through the railing, lowered that hanging water bottle, lowered the table, and got a massive amount of water out the line. (I had RT in here with me while I did it).  Then vented him for a bit from 7:45a-8:45a and diaper change since he wasn’t settling. Lowered the Farrell bag. Got done around 3am and just woke up now.  He’s still in and out of sleep.   Around 8:20a, the nurse, gave him the 7mL of Bactrin way too fast and he spit up more then I’ve seen.  They’re doing rounds now." Mom found out the day nurse is someone we had in the NICU. Nice but very incompetent. Definitely not our pick. We had several incidences in the past where she blew Mom's m...

Friday, April 1st, 2022 April Fool's! I wish! No Mom and James are still in the Hospital!  It was a very long day for Mom on 1 hour of sleep (6am-7am) in the good ol PICU chair. Our Day nurse was super nice and remembered James from the NICU even though we never had her before (everybody knows James). Dad was able to drive by the hospital around 12pm to drop off Mom much needed Starbucks and food. Mom had to let the nurse know that she would be running downstairs real quick to meet Dad and that she did her to stay in the room for a second. Even though it's only for a few minutes it's still scary to leave James by himself. Now that he is bigger, he is also stronger and can pull on things and disconnect himself easily.  James was very vocal and let everyone know he could talk over his cuffed trach. This alarmed some of the Doctors and PAs who could not get used to hearing him and kept thinking something was wrong. Someone from Child Life stopped to bring James some developmen...

Thursday, March 31st, 2022 One year ago today James had his tracheostomy surgery. This year went by so fast! Mom noticed that James had been having retractions all day with a fast respiratory rate. After posting to the Trach Moms Facebook group asking for their advice it was a resounding Yes to take him to the ER. *For context the lung retraction video below was taken at 7:45pm. It just so happen to be Trach change Thursday so we wiped him down and changed his trach before heading to the ER, since we didn't know how long we would be there. James then fell asleep because that's what he does after trach care. He is used to his nightly routine. We called the pediatrician to let them know we were heading to the ER. They said that was a good idea so that we could get a lung x-ray and sputum culture. We arrived around 10:30pm. Unfortunately only one parent could enter at a time, so Dad stayed in the parking lot while Mom registered and waited in the lobby. We were brought back to an ...

Wednesday, March 30th, 2022 James continued to have his G-tube leak. We are venting 5-7 hours a day, which isn't normal. That is how much air James has in his stomach. We had physical therapy in the afternoon and extra floor time in the evening. *Forgot to mention when the RT stopped yesterday by we had a close call with James twice. The first incidence was when we were trying the different ventilators to see if any of them would work. Unfortunately in order to do this we needed to switch James back and forth. At one point we switched his circuit to a ventilator that wasn't working. 😮 It was NOT blowing air and was not supporting him. Mom immediately told her we needed to switch him back to the other vent. But the RT insisted she finagle with the pressure tubing to "fix it" instead. Mom grew concerned because she wasn't able to fix anything and did not want to keep James disconnected. Mom told her again and then again we needed to switch him to the other vent. Fi...

Tuesday, March 29th, 2022 Early in the morning, the RT from our DME showed up with another ventilator but unfortunately this one sounded worse. 🤯 She even made a comment about how another family she was seeing did not have a back-up ventilator so we were lucky that a 2nd one got approved. Like we should be grateful we have one working ventilator. Really? It took 6 months to get the back-up ventilator approved by insurance. The blood, sweat and tears of Mom, the Pulmonologist and several others. But we shouldn't complain about that back-up ventilator not even working...? The whole point of having a backup ventilator is that when these ventilators die (which clearly they do quite often since we are in the situation) James has a second chance. If his ventilator were just to stop working we would need to bag him with an ambu bag and call 911. We would be bagging all the way to the hospital with an increased chance for brain damage or death. So yes we went to the trouble of having insu...