The Journey of James Weston

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...

Sunday, September 12th, 2021 We had 2 nurse meet and greets scheduled for today and 9am and 12pm. Our 9am was late because she couldn't find the house. The staffing agency's scheduler called to let me know that Mom needed to call her because she was lost. The number that was given was International so Verizon immediately blocked the call. At this point, Mom installed WhatsApp to make the outgoing call. Finally she found our house and we had a good "interview". However she said that she didn't think she could start because the staffing agency's coordinator told her one thing and the clinical nurse told her another. It just sounded like a lot of miscommunication already. If she does work out it will only be for Mondays during the day. Our 12pm was a No Show. 🤦🏻‍♀️ This nurse was supposed to cover nights 3 days a week. So Mom called her contacts at this agency to let them know of the No Show and get some answers. After being discharged the patient is required t...

Saturday, September 11th, 2021 Mom and Dad had their first full day home with James. It has been a whirlwind! Mom slept downstairs on an air mattress (better than a chair) and took night shift. James is a pretty good sleeper waking only a few times throughout the night; however, there are feeds and meds around the clock which is the reason for very little sleep. Between the two of us we are constantly doing something. Just a few of the things we're busy doing... Feeds - This involves making sure enough (but not too much) breastmilk is thawing every 4 hours. Grabbing bottles from our deep freezer in the garages, and moving them into our medical frig inside the house to thaw. James is currently at 37ml/hour so since breastmilk can be out for 4 hours according to the CDC we give him 150ml in his feeding bag which pumps this into his J-tube slowly over 4 hours.  Meds - Not only giving James his medications when they are scheduled which right now is (6am, 9am, 2pm, 3pm, 9pm, 10pm, 3am...