The Journey of James Weston

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...

Wednesday, September 8, 2021 James had his Small Bowel Series at 9:30am this morning. A small bowel series is an x-ray examination of the small bowel using fluoroscopy and an orally ingested contrast material called barium. Fluoroscopy makes it possible to see internal organs in motion. When coated with barium, the radiologist is able to view and assess the anatomy and function of the small bowel.  Mom was not allowed to come down to Radiology. It took the whole day to get the read done so we could know the results. We found out towards the end of the day that the results were normal and that there was nothing to be concerned about. The contrast that was put through his j-tube really cleaned James out. He had nine bowel movements for the day. At one point, three huge diapers within 1 hour. Just in case something we'll share that majority of this diapers were pretty liquidy and yellow however there were hard green like pebbles in his stool. The doctor said that that was most likely ...

Tuesday, September 7th, 2021  Mom got back to the room from the ER around 3:30am. James decided to wake up, it's like he knew Mom just came back. He stayed up until 5:30am. Then Mom slept from 5:30am to 7:30am. James was then up for the day...  Mom has been staying every night at the hospital while Dad gets back to work. Dad has been coming to the hospital in the evenings to relieve Mom so she can go home and take a quick shower. He handles trach and G-tube care, does a wipe down bath, changes his outfit, reads books, and plays guitar. Once James gets his melatonin at 9:00pm usually it has kicked in by 9:30pm. Lately it has also been taking his 10:00pm clonidine to get him to sleep. We finally got the small bowel series scheduled for 9:00am tomorrow, Wednesday. James will be NPO starting at 5:00am. The doctor today also started discussing discharge mainly due to the fact that the Reglan is now out of his system and he is tolerating his feeds, the ventilator, and his weaning of...