The Journey of James Weston

Tuesday, October 12th, 2021 Today we got the medical crib delivered. Two men drove the parts here from our DME in Melbourne, FL and put it together. It's heavy duty! It's a full size regular crib mattress, so we need to get some bigger sheets! The sides go up and down and it is on wheels. The height is good for us to do trach care and a bath right in his bed. This way we do not have to set up the massage table every night in the living room. We do however still need to disconnect the ventilator circuit to go underneath the railing to prevent rainout. Right now, the circuit would drain into him with the sides up.  Even though the sides go down we do not want to leave them all the way down if we walk away from the crib. He doesn't roll yet but it will be soon.  James also got to try out his new high chair. Thanks to Vicki, Debbie, and Maria for the registry item! It is so comfortable for James to sit in and very safe. The high chair is on wheels and can also can lay completel...

Monday, October 11th, 2021 Today was the first time that Mom went to a Doctor's appointment with just a Nurse (without Dad). This means she needed to be highly directive with loading and unloading the stroller and car. Mom also had to drive while the nurse sat in the back with James. It was successful.  At the pulmonology appointment James was scheduled for his synagis shot. This time they were requiring him to get 2 shots due to his weight. Poor baby was very upset! So much that he had diarrhea immediately. They checked his end tidal CO2 levels which looked good. Mom asked her list of questions which included... If we could let James be vocal by letting a leak in his cuff? And to review interesting billing claims. As far as the leak, since it was affecting his Tidal Volumes they said this would cause lung collapse overtime. So no, we can't let James be vocal yet. Maybe for very short periods of time. Uncle Andrew left to go back to Arkansas. He said Goodbye to James in the pho...

Sunday, October 10th, 2021 The boys went to Dolphins Buccaneers games down the street. Yes, we are only a few miles from the Stadium! James spent the day with Mom. After the game, Uncle David got to meet James for the first time. And Mom talked drugs to the Pharmacist (Uncle David). The adults played a few card games while James took a short nap.  Trach care has been a little difficult lately since James is reaching for his trach and being grabby. We are thinking we are going to need to swaddle him again moving forward. After we do the trach tie change Mom always needs to hold him for a bit to calm him down. Then he gets his meds and goes to sleep. P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️ P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something...

Saturday, October 9th, 2021 Mom held James all day since Dad went to the office with Uncle Andrew, who is in town this weekend, to work on Better Than Rich . Uncle Andrew thinks James is pretty cool. He really is such a happy baby! Tomorrow all the boys go to a football game. 🏈 So this Saturday James had lots of time with Mom for cuddles and music lessons. He learned about 70's blues rock, 80's soul pop based folk rock, and 90's acoustic alternative. Mom played Bohemian Rhapsody for James, and you know that part that goes... "Mama, oooh", well James quivered his bottom lip and cried both times during the song. So sad, so adorable. Mom was finally able to start organizing a lot of papers that have just been thrown into a box for the past year. And by papers she means bills, claims, mail from insurance, receipts, business cards, important medical documents, etc. The label maker has been the best thing ever! Unfortunately tomorrow our Sunday nurse will not be able t...

Friday, October 8th, 2021 The only big change we noticed is that James' G-tube is having major output. The erythromycin is supposed to help with this. 🤷🏻‍♀️ He is very sensitive to a large quantity in his stomach. You can tell when he's having reflux. 99% of the time if James is upset there is something wrong. Sometimes he needs to be manually vented with a 50 ml syringe to release a build up of air (the ventilator causes this). Other times it's just simply lowering the Farrell bag so that his stomach can drain. Most people do not use the Farrell bag like we do. They just have it connected to the feed. In Jamesy's case his G-tube is being vented 24/7 (exit only) to this bag, whereas his J-tube is being fed 24/7 (entrance only), as well as meds. Those that have just a G-tube can be fed and vented at the same time.  The FARRELL* Valve System is a closed reservoir system intended to allow the evacuation of excess gas from patients utilizing an enteral device.   The bag i...

Thursday, October 7th, 2021 James had a pediatric appointment today early in the morning. We scheduled it early to try and avoid the Florida heat in the afternoon. That was also our first time going to an appointment with our M, TH, F nurse. When we got to the appointment they asked her to leave and sit in the waiting room. The rule was that there can only be two people with the baby due to covid. So I guess in our previous appointments we lucked out because our nurse was able to come back with us. Overall the appointment was good. We were there simply because it was his 9-month checkup. They said that he was due for a hepatitis b shot even though he already got them all. The reason they said he was due is because his last shot was given "9 days early" and therefore didn't count. 🤔 They also wanted to give James the flu shot. They did his measurements and weighed him. Weight: 7106 grams (15lb 10oz) Height: 59.5cm (23.42 inches) Head Circumference: 43cm There were 2 thing...

Wednesday, October 6th, 2021 In the afternoon Mom had her monthly Zoom with Insurance, Staffing, and the Pediatrician's office. The call is intended to make sure that we are adequately staffed and to iron out any issues. Well only Insurance showed up for the call 🙄, so we went over any changes regarding his medications, feed, overall health, bills, claims, denials, and appeals. CMS Medicaid (Children's Medical Services) was just purchased by Sunshine, and they state that this change will not affect the patients at all. However anytime a company is purchased by someone else there are a ton of changes... new websites, new logins, a ton of bugs to be worked out regarding processes and technical issues usually due to "new traffic". Well this is having Mom make several phone calls a day and not get anywhere with anyone just to be able to log in to the new site.  Tonight was bath night for James! We do a bath every other night, and when we're not doing a bath we wipe h...