The Journey of James Weston

Wednesday, January 19th, 2022 Current Weight: 8.865kg (19 lb 8.7 oz) Current Height: 65.3 cm Today we had our Endocrine appointment and we got a current height and weight on James. It was just Mom and the nurse today. A little tricky but only one person is allowed in the room at a time. The nurse was asked to stand in the hall. 🤷🏻‍♀️ Even though we work very closely together all day? That being the case... Mom needed to take James out of the stroller and move him to the scale and measurement counter without the stroller tipping over from the weight of the ventilator.  The doctor decided we should get labs done to see if we could wean him off of sodium chloride and/or calcium. These are the two meds that are prescribed by the endocrinologist. James already had a lab order from the pediatrician to check his lead levels as well as a hemoglobin count. Mom wanted to limit the number of times James would get stuck with a needle and put off the pediatrician lab order from last week unti...

Tuesday, January 18th, 2022 Today we managed to get a photo of James sitting forward on his own. Now, if he leans back at all he falls but we are working on it! You'll notice he is sportin' his Christmas pajamas. Well last night after his bath we had him in his Thanksgiving Pajamas but he definitely peed through his diaper overnight. He pees out the side or something managing to get it up his back and on the bed. This has been happening frequently! 🧺🧺🧺 Mom tried not to change him during the night, since it normally wakes him up. But we always make sure to feel his chest in case he needs suctioning but that's about it. If he is awake when we are doing formula at 3am then we will go ahead and change his diaper and switch the pulse ox to his other foot. Not much to report today another than we noticed that James has a sore right below his trach tie at the bottom of his neck. We think it could be from a part of the trach tie plastic touching his skin, a possible insect bite,...

Monday, January 17th, 2022 Today James had a GI appointment. Dad moved around his schedule to accommodate so we wouldn't have to cancel since our nurse called out. Before our 2pm GI appointment Mom called the pediatrician's office to see if she could schedule a stop in while we would be at the complex Clinic regarding James's rash. The office voicemail said they were closed. Well we got to our GI appointment dad walked over to the pediatrician's office and let them know that James had a rash and we would like to be seen today. They told us they would schedule us for 2:45pm. Well we waited in the waiting room for 1 hour, didn't even get to see the GI doctor till 3pm. These long waits are always stressful because even though we have a full oxygen tank and James does pretty well with his oxygen, the ventilator batteries do not last! The ventilator has an internal battery that last about 45 minutes and two external batteries that last about 1 hour each. So when we start...

Sunday, January 16th, 2022 The night was rough because every time an alarm went off both of us jumped out of bed to see what was happening. Most of the time, the ventilator was just alarming LOW PEEP because James has a leak in his trach (his cuff won't stay inflated). It's not a terrifying alarm, it's just that it's the same exact sound as the DISC/SENSE alarm 🚨. And that one is terrifying. 🤷🏻‍♀️ Below is a YouTube video explaining all of the things that could be causing a DISC/SENSE alarm. Overall James slept well. But this was the night Mom would have normally slept upstairs by herself so it was just another night shift for her again. Hopefully she'll get to take a nap sometime this upcoming week. 😆 The hardest part was on our backs. Leaning over the Pack N Play to change diapers, suction, or do anything with his GJ. We figured out a trick which was to sit in a chair and lean over. I think for the most part the goal is to only have him in the back and play fo...

Saturday, January 15th, 2022 Mom & Dad took advantage of our nurse working today and went out for breakfast and a trip to the mall. This is the second time since we've been home from the hospital that we've been able to go out for a meal together. After the nurse left at 3pm, we took James upstairs to watch a few movies in the TV room loft. We even did his wipe down and trach care on Mom's desk. Then we moved James into our Master bedroom and set him up in the Pack N Play for sleep. We were doing this because we did not have nursing the next day and wanted to continue to chill upstairs. It's literally like a vacation for Mom to lay down and watch a movie. 😂 But more importantly we were practicing with the setup and him sleeping in the Pack N Play because this is what we will need to do when we travel. Everything worked out great! We cut a hole in the netting in middle, on the side so that the dual limb circuit could slide through. But the most important thing is to...