The Journey of James Weston

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...

Monday, September 6th, 2021 New doctor this week who wanted to wean Clonidine. Said "We haven't weaned clonidine in a few days." An actuality it was just weaned Saturday, and it's Monday morning. She also wanted to wean PEEP to 10. Alright, let's make all the changes at once!  Mom told her that one of the GI doctors would like to do the small bowel series to rule out an obstructions, but the PICU Doctor was not in agreement to get this done. So Mom had to really push for this. We're not just leaving here on a bunch of medication agains with no answers as to why his G-tube was expelling 3x the amount of gastric drainage. On top of this, bowel obstructions runs in the family. Both mom's dad and mom's grandmother had colon cancer. So we are better safe than sorry in checking it out. A different GI Doctor came in and said "Oh he looks good, his heart rate is better now". Mom said, "yes he is sleeping". He said, "No his heart rate w...

Sunday, September 5th, 2021 Today James brought the luck of the Irish ☘️ to Notre Dame football 🏈 with a 41-38 win against FSU. Last night Mom dumped out the water from James' circuit about every 3 hours which is an improvement from every hour. Our heater is still set to two dots (medium?) and his secretions are still thick, so we don't want to go back to one dot (low?). I guess this is the heater setting we will have to live with. Literally. Mom also changed the CO2 end tidal because it wouldn't stop beeping throughout the night. It's one of those beeps you can only hear when you're in the room. In our previous post, we discussed how there were changes to his feed rate. Three different doctors, Friday, Saturday, and Sunday. Friday - increased his feed by 1ML every 12 hours Saturday - decreased his feeds back to 25ml/hr Sunday - wanted to increase his feeds to 32ml but they decided on increasing by 1ml every 6 hours This weekend one of the doctors mentioned that Ja...