The Journey of James Weston

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...

Tuesday, March 7th, 2023 This is a very long post, sorry! ⚠️ 🌅 Around 6am, James showed signs of distress. His respiratory rate and heart rate was high. Mom took his temp and it was 100.7. This wasn't just allergies! Mom put James on the ventilator after sleeping with his HME. We figured since he was still trached but it made sense to use the ventilator to support him if he was having labored breathing. She went upstairs to let Dad know that she was taking James to the ER. He decided to come along too. We did an emergency trach change before leaving just in case there was a plug. The rule of thumb is, "When in doubt, change it out". In James' whole life we have never seen a plug. Every time we have done a trach change, his trach looks very clean. This was the same as all the others. It was our first time going to the ER in the morning. Typically we are leaving the house around 9pm or 10pm at night and having to deal with night shift. We headed to St Joe's because...

Monday, March 6th, 2023 James at PT at the hospital 🏥 and unfortunately he wasn't feeling well. We still thought he had bad allergies but kept him capped for PT. James trying crying as we got on the 1st floor elevator and continued as we walked in PT. He kicked and screamed and tried to reached for Mom as the therapist took him back. Mom warned him that she would need to listen out in case he needed suctioning because he has had bad allergies. Shortly after, maybe 10 minutes or so the therapist came back with him covered in mucus. He had choked and thrown up on himself. But when James was handed to Mom it all transferred over to her clothes instead. They gave us a pile of dry wash rags to use to wipe down. Mom suctioned him and then the therapist took him back again for the last few minutes. We got home just in time for Early Intervention therapy which we moved to Mondays. The GIF is of James dancing to classical music from Baby Einstein. The rest of the day James seemed kinda let...

Sunday, March 5th, 2023 In the morning James got tickled and cuddled by Dad. For family day we wanted to protect James as much as possible with the decannulation coming up this week, but still wanted to do something out of the house. So we took James to the nearby park. This was his second time on a swing. He loved it! Dad really wanted to have him sit in the grass, so he placed him on a small patch. Unfortunately James has a grass allergy which causes increased secretions so Mom had to stop that to prevent any respiratory issues. Afterwards we went to an early dinner for sushi 🍣 and James enjoyed more soup 🍲! He was capped the whole day. In the evening at home, James started gagging and choking on mucus out of nowhere. He threw up a little. Mom put him on the HME because he was having a hard time handling the secretions. Then we gave him a bath putting him back on the cap (because the HME cannot get that wet), except this time he threw up a ton in the tub. Like a ½ cup of mucus. It ...