The Journey of James Weston

Saturday, March 19th, 2022 James cuddled with Aunt Robin and had puppet shows with Juju. Today James started really making a lot of noise with only a deflated cuff, with no Passy Muir valve. Videos below.  James enjoyed a cold wine glass to his teething gums. He now has 5 teeth showing. James also loved his star projector light show that he received from Beverly! ✨ P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...

Friday, March 18th, 2022 Today was the first day of Dad's Better Than Rich event on Mastering Business Systems. Family would be coming in town from Jacksonville to help Mom for the few days Dad would be out of the house. James had a full day of playing with toys with Mom. He didn't take his second nap till 6:30pm. 😲 Just in time for company! In the evening, Juju, Aunt Robin, Champ 🐾, and Tommy 🐾 came to visit.  P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...

Thursday, March 17th, 2022 James had a few visitors today. It was the first time James interacted with other children/babies. Even though he wasn't feeling well he was all smiles. We showed our guests how James used the Passy Muir valve to speak. In the afternoon, Mom contacted our DME about our respiratory supply order missing items and the hold up on transferring our GI supply order. The responses were ridiculous. Why were supplies missing? Because they decided to give less to make sure everyone gets some (even though they are charging our insurance for the original amount). This was a decision supposedly made in a meeting but never communicated to the customers. Communication is non-existent. Why was our GI supply order still not transferred and shipped out? (We haven't received any GI supplies since January.) Well because people are lazy and everyone blames someone else. That's the easiest way for someone to handle something in this field. They are "waiting to get ...

Wednesday, March 16th, 2022 James seemed like he was getting worse so Mom called the pediatrician to see if we could come in today for a sputum culture. Unfortunately their response was pretty crappy telling us just to go to the ER. What is the point of having a pediatrician then, especially being part of the complex care clinic? We called the Pulmonologist afterwards and they told us they could take us if we could come in in 20 minutes. They are about 12 minutes away so Mom quickly packed everything up. She was planning to just go and make the first trip solo with James in the car, but it wouldn't have been ideal considering James needed to be suctioned often at the moment. Dad ended up rescheduling some calls so he could drive which worked out. We made it about 10 minutes late, because there's just a lot to do! A lot of equipment and double checking! Even though we are very proficient at this point, moving as fast as possible, it still takes time. And there was traffic, Tampa...

Tuesday, March 15th, 2022 James does not look like he is feeling well. He feels warm and most likely has a fever. 🤧 We have 4 different thermometers that all show different temps. We haven't found one yet that seems accurate. Children and babies with trachs are more susceptible to getting sick, which means if others (especially children) are sick they should not be in contact with an immunocompromised trach ventilator dependent baby. 😷 James has also been scratching around his trach ties as soon below in a GIF. We've been using Nystatin powder on his trach ties and also applying it directly on his neck.  We have held off on his bolus feeding until we can get his secretions under control. We've had to use saline bullets to flush out his ballard through his circuit. Also emptying the humidification chamber twice a day to wash and clean. Sometimes it's just bad allergies (James is allergic to grass) but Mom is leaning towards this being an infection due to the fact that ...