The Journey of James Weston

*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...

Friday, September 10th, 2021 We had a list of things that needed to get done prior to Discharge. James needed to get a new Clonidine wean schedule due to the withdrawal symptoms he was having yesterday. We needed to get the rest of his meds from the pharmacy. Lastly James needed to receive his synagis shot to protect him from RSV. We eventually got that all done!  We left in the late afternoon. Packing up the stroller, and then the car, and then back in the stroller, to get in the house is still super nerve wracking. This is life saving equipment and one fast wrong move and James is disconnected. The more Mom and Dad get practice the more comfortable we will feel doing it! Our first pediatrician appointment is on Tuesday, so we have some time to review before traveling again. James loved his car ride and is just taking it all in.  In the evening, Mom and Dad gave James a nice long bath. He immediately was relaxed and loved it. Then one of Dad's sales reps helped us by dropping...

Thursday, September 9, 2021 James had a good night. His heart rate was in the 70s. When he was younger this would have be considered bradying but as he gets older his heart rate will go down. A lot of time this is how we can tell whether or not he is in a deep sleep or is stirring without even looking at him. You would normally hear a when baby (without a trach) would become fussy and start to wake up but you cannot with a tracheostomy especially on this super loud ventilator. James was scheduled to get labs done today to check his electrolytes. He ended up getting another dosage of Ativan 30 minutes prior which made the entire process quick and easy. We had 2 nurses, Mom hold James down while the tech from the IV team got James in one poke. The results came.back that his electrolyte level were all normal. So because the sodium chloride was not high he will continue on that supplement. After the blood was done James was out, sleeping like a log. Thanks Ativan! As we prepped for dischar...