The Journey of James Weston

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...

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...