The Journey of James Weston

Sunday, September 19th, 2021 If there would have been Primary RTs just like RNs then Vanessa would have been his Primary Day Shift RT. He lights up and has always responded with smiles! 😊 She stopped by for a visit with her Mom, who has also been following our journey. It was so nice to have these visitors especially since James hasn't met much family yet! We put James in the swing and he tolerated a whole hour and then some! This week we have nursing scheduled for Monday and Tuesday both Day and Night Shift between 3 different nurses. We shall see! We also have 4 appointments scheduled between Pulmonology, Medical Stroller, Pediatrician, and ENT.  Photo below shows his Farrell bag changed from yellow to green. A quick search in the Trach FB group to find out that this is actually okay. At first it was concerning. 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 ...

Saturday, September 18th, 2021 Dad put together the swing we got back in January! Thanks Amy Hill! James loved it. It swings both side to side and forwards and backwards. There are a bunch of songs and sounds for him. Other than that Mom and Dad continued to try and put supplies away and get the trach cart organized. Currently we are having a tough time hooking the humidifier to the 3 tiered cart. Right now the living room looks like a construction zone. Tools are everywhere. We bought a projector so that we could watch movies on the wall. We live in a two story townhome with our "TV Room" upstairs in a loft. Currently James is downstairs in the "Living Room" which originally was just books, a piano keyboard, and guitars with a sitting area. 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. T...

Friday, September 17th, 2021 We ended up having our first Day Shift nurse today. It's a small world because she just happens to be from Dad's hometown in New Jersey and we figured out that her daughter graduated 2 years after him at the same High School. He pulled out his yearbook and quickly found her there! 😆 This nurse definitely had more experience than the previous nurse. She helped Mom the whole day with organizing a cleaning and replacement schedule for all of the medical equipment. The nurse was able to help clean up so that Mom could hold James. We are still working on a list of nurse duties so that they can be as helpful as can be. In the beginning, Mom will want to continue doing all of James' care so that she can show them how to do things correctly and safely. Video below shows James putting pacifier back in himself. He has complete control now! P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video...

Thursday, September 16th, 2021 Dad had a few virtual meetings throughout the day. James slept in Daddy's lap right through them. Mom stepped out to go to the DMV and get our handicap parking decal. James is grabbing, holding, and reaching. In just a few days of being home, he has been checking off those development milestones!  No nurse today or tonight and that's okay! 😆 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 so special! 😭

*This post was corrected, as we mixed up our days. Sorry just super exhausted and everyday is running together.  Wednesday, September 15th, 2021 Mom and Dad spent the morning playing pharmacy and drawing up meds so we have them ready to give to James. He really loves his boppy and learning all the things, especially about yellow triangles. It's so funny! Sparkabilities are great educational videos. The staffing agency kind of sucks. It's just really unorganized and a lot of miscommunication. The nurse finally showed up tonight. This was our first nurse experience with this agency. She's nice but seems fairly inexperienced. Dad was working the 2nd half of the day into the night so Mom handled trach care with the nurse. She claims to have trach and G-tube patients however trach care with her was terrifying. James was choking the entire time. At one point, Mom just told her to let go and stop what she's doing. Then later on in the middle of the night, she suctioned him and...

*This post is late due to no sleep for several days. 😩 Tuesday, September 14th, 2021 James had a horrible night. He did not sleep at except for when Mom held him for about 45 minutes until she needed to out more milk in his feed. As soon as he was put back in his crib he was awake and very upset. Mom called for Dad to come down because at one point he did have purple coloring. Later in the night after hearing the alarms for so long Dad came down again. You sleep pretty lightly when you have high anxiety. Both of us were up trying to figure out what was wrong. We figured that he is either having "new" BPD episodes again (that look different) or he is withdrawing. We had our first pediatrician appointment in the afternoon. It took us 40 minutes just to get out of the house. Look at the hot mess express! 😂 The Incident We decided to do valet because, did you look at the amount of stuff we have? Going into the appointment in front of the building, we had to unload the car into ...

Monday, September 13th, 2021 You may be asking why are swe still keeping track of the Days. At first it was to see how many days we were in the hospital, but now it's a countdown to when James will be decannulated.  Sunday night, Mom and Dad slept downstairs on a queen air mattress that didn't have a hole but sure was uncomfortable. James had a pretty rough night, waking up constantly throughout the night. Mom and Dad took turns getting up. Normally he is pretty good about sleeping from about 9:30pm/10pm until 5am-7am. At least this is what he did in the hospital most nights. But for some reason he did not. There are so many variables we don't even know where to start. His clonidine was weaned today. It went from 3 doses yesterday to only 2 today. We think this is a pretty big wean. Tomorrow is our first pediatrician appointment. No nursing today or tonight. The Night Shift nurse ended up having an emergency and told the agency she would not be able to make it. She said she...