The Journey of James Weston

Thursday, January 20th, 2022 Nurse worked today because she wanted to get some extra hours in. Sure, why not. The nurse's shift is supposed to start at 7am, but we have never had our main nurse show up on time. Typically 30-45 minutes late everyday. This would never fly in any other job. But it's also not worth it to say anything since we've had so many nurses who were worse, we wouldn't want to lose this one. They say, "The Devil you know is better than the Devil you don't". So we'll just stick with her. At 7am, Mom typically does the feeding bag, diaper change, pulse ox change, suctioning, and sometimes venting. Recently James has been sleeping right through this and is back to sleep by 7:20am which allows Mom to also go back to sleep. When the nurse comes it's a rare event for her to just quickly greet the nurse, do report on the evening and night shift, and get to go back to sleep. Today started off with Mom getting woken up by the nursing yell...

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...