The Journey of James Weston

Sunday, February 12th, 2023 A somber morning as we packed up equipment into the car. It was a good thing that we had backup supplies at Juju's because Mom had forgotten major items in her rush to get out the door in 10 minutes on Thursday. We forgot things like trach ties, 2x2 split gauze, and HMEs! But we had enough stashed to be saved! Guess what else? We forgot the Tobramycin that had just arrived at the house on Tuesday. James was supposed to start this on Thursday night. His schedule is 28 days on and 28 days off. We ended up starting this on Sunday night instead. On our way home we stopped for dinner in Orlando looking for a good spot. We found a Pho restaurant that was on Triple D called Saigon Noodle & Grill, so we had to check it out. James was again groovin' to the music. Video below. This time is was current pop music remixed into lounge versions. Our waiter was playing peek-a-boo with James and he was cracking up. In the dark photos below on our drive home, Jame...

Saturday, February 11th, 2023 Today Dad watched James as we tried to continue our normal routine with Mom getting out of the house on Saturdays.  In the morning Juju and Aunt Robin took Champ to the vet. He still had his IV in from a few days ago. Champ was not doing well and had had a very bad night and morning. He had passed away at the vet. 😭 Champ would no longer suffer in pain. We were blessed with a loyal pup on March 12th, 2015. Ironically it was also Champ Week for men's college basketball. This is the day the lady from the rescue facility brought Champ all the way from Valdosta, GA to Jacksonville to meet Mom's family. Initially we were supposed to adopt a female dog but since she had others interested we decided Champ needed a home too. He was rescued at 8 years old and was previously crated the majority of his life. 😥 Champ came to us with a buzz cut but only a short time later his Maltipoo coat grew out. Early on in his life with us he was mistreated by a veterina...

Friday, February 10th, 2023 Today James got a new guitar from Juju! This way he has one wherever he goes. James was very happy to see everyone especially Tommy and Champ. James had no hesitation to pet Champ, however with Tommy he's still a little cautious. We think it's because Tommy also gives off a hesitant energy. Every time James sees the dogs though he gets more and more comfortable. We didn't do much today since yesterday took most of our energy. Mom just confirmed James' appointments for the upcoming week. James has first dentist appointment and an appointment at the hospital with motion analysis for possible PT equipment. James joined us for dinner while he stacked colorful cups. He is obsessed with stacking and lining up everything now! In the late evening Champ wasn't feeling well and had to been giving seizure medicine a few times. He has been struggling with his health. 😥 P.S. You can email James your love and support as often as you’d like. Mom and Da...

Thursday, February 9th, 2023 🤕 Again, James had 25 sensors attached to his head, face, and chest. They monitored his brain waves, oxygen levels, heart rate and breathing as well as eye and leg movements while he slept off the ventilator. We have no idea what these results will show. On one hand, Mom had to suction him throughout the night from 10pm until 5am, which we normally don't have to do. (Mom did not sleep, but James was able to sleep through everything.) On the other hand, he did not need any oxygen last night. 🤷🏻‍♀️ This is the longest he has been off the ventilator and just on an HME; a whole day and a half! Both our pulmonologist and our ENT let us know that they don't rely on the sleep studies to provide very accurate information. These two doctors have always been up on the latest research and studies have found that sometimes the results will come back saying there's a sleep obstruction, which ironically sometimes is just the trach itself. 😂 We won't h...

Wednesday, February 8th, 2023 James had early intervention therapy at 11:30am and then took a good nap from 1pm to 3pm. After that we video chatted with Juju, Aunt Robin, Champ, and Tommy. We needed to be at the hospital at 8pm so we started a bath and trach around 6:30pm. James also needed his pulmicort nebulizer treatment completed so we put him on the vent for 15 minutes to administer. Of course we were rushing out the door! 🏥 We were planning on Dad coming in just for the setup and then going back home. However when we arrived there was a queen size bed in the room so Dad stayed the night as well. This was the first time being back at the hospital where James was born and where we lived for 6 months. The NICU is separate from the PICU at St. Joseph's. These used to be two separate hospitals but recently merged. This time we were on the 4th floor of the NICU. It was pretty empty and quiet. James had 25 sensors attached to his head, face, and chest. They monitored his brain wave...

Tuesday, February 7th, 2023 In the morning, Mom called ENT to try and reschedule our next appointment. We didn't want to wait 6 weeks to discuss sleep study results. She had to leave a message. We had physical therapy in the afternoon. Tomorrow night he would have his sleep study at the hospital. The only pictures that Mom could get today were ones of him watching something on the tablet. He is so active it is nearly impossible to capture any photos or video while Mom is chasing after him as he scoots away or doing his care. He thought it was funny today that when the tablet turned off he thought he just couldn't see it and put his eye right up to the glass. Don't worry his vision is fine. 😂 Mom did get a call after 6pm from the hospital just verifying that we would be there tomorrow for his sleep study and asking if we had any questions. The questions that Mom had where regarding his medications and nebulizer treatments. Basically we needed to have all of that done at hom...