The Journey of James Weston

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...

Friday, January 14th, 2022 Today our nurse did a great job with getting James on the floor. Our new "activity floor mat puzzle foam tiles" are helpful in giving him more space to roll around. Well that's the goal. 👍 We also had Physical Therapy at 12pm. One of the things we are trying to work on is stretching the muscles on the right side of his neck and strengthening the ones of the left side. If you notice in the previous week's photos James prefers tilting his head to the right. The whole right side of his body is tight and shorter. You will notice in the photos below that when James is lying on his right side we try to put a pillow underneath to lift it up, to stretch. Laying on his left side we would put something underneath his shoulder to try and have his head hang down. He doesn't tolerate this for very long. Our PT said that sometimes massage doesn't help babies with relaxing the muscles to stretch it because it causes them to tighten up. So we almos...

Thursday, January 13th, 2022 Today our M,W, F nurse worked the morning hours again to get some extra hours. James had some eye patching, playing in the bouncer, sitting up in the boppy, and some more floor tummy time time. Mom was finally able to take a nap while the nurse was watching James. You can only go so many days on less than 4 hours of sleep a night. We ended the evening with our regularly scheduled trach change. This time we switched up roles. Dad took the trach out disconnecting him, and Mom put the clean trach in. There is a lot of anxiety every single time! Don't think that will ever go away, and it shouldn't! It's better to be on your toes than comfortable, in the situation.  We were also going to do a circuit change but we are running low on circuits. Once we receive our next supply order from our DME we can do the change then. We have found that it is important not to do weekly or biweekly changes "just because". The things connecting him to the ve...