The Journey of James Weston

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...

Saturday, September 4, 2021 Early Morning :   James finally had a bowel movement after 24 hours of not going.   It was a large one.  💩 James was able to have a FULL NIGHT SLEEP. His heart rate stayed under 100 for 95% of the night.  He was relaxed, calm, comfortable (even though his neighbor was crying bloody murder ALL NIGHT).  Morning:    James woke up around 7:30a with another large poop.   Dad started the morning routine closer to 8am. It begins with soft Disney music for 15-20 minutes. Then open the blinds to let light in. Then play with a few toys.   Then CocoMelon for an hour. Then read a book. Then play guitar and sing. Then more CocoMelon. Then toys. Then a nap at noon. (We will see if it sticks  🤷‍♂️) We had the head of GI come in and briefly examine James. He reviewed a few of the past X-rays and is curious as to what’s causing some much bile to come out of the Gtube. He thinks there may be an obstruction in the d...

Friday, September 3rd, 2021 Overall Today's Changes: Discontinued Robinul Increased vent heater to "2 dots" Received 3% nebulizer treatment Increased erythromycin to 3x a day; 9am, 3pm, 9pm Gastric drainage output from G-tube over 322ml in 24 hrs Increased feeds buy 1ml every 12 hours New admit nextdoor again, young boy last night screamed for his life for several hours. You can't sleep hearing a child scream and cry. Well James can, he's used to it. But lord, what a night. Still no access to the Hospital portal to obtain James medical records. It's been over a week to get access. The issue is the names don't match up. When James was born he was under mom's name with a "-Boy" next to it. It was like this for 8 months. But now being reamitted, he's under James and it's throwing everybody off. Which means that his first 8 months of records is going to be under a separate account, and now they need to create a second account. There shoul...

Thursday, September 2nd, 2021 Last night James did a 4-Hour LTV trial and did great! He also did really well sleeping through the majority of the night. This is great for James, now Mom and Dad just need to figure out how to get a few hours sleep in between handling his feeds, medications, suctioning, and managing the wet circuit. Today we have one of our favorite day shift nurses in the PICU. It's very obvious that she cares for James, always stopping by when she is not assigned to him to check up on him, and goes out of her way to go above and beyond with him! Not to mention she is always trying to improve processes which in turn will help the hospital. Not everyone is like that, because we have had our fair share of layabout clock watchers. Some people use the excuse that the PICU is just so much more intense and busier than the NICU that's why they don't have time to spend with the patient. Well the fact is some nurses do and some nurses don't, and it's all the ...

Wednesday, September 1st, 2021 Today we tried James back on the LTV ventilator and increased his i-time to ".4" from ".3" around 12:30pm. More inspiratory time increases mean airway pressure, and favours better oxygenation, at the cost of CO2 clearance. Essentially, they increased the time for his inhalation breaths.  Unfortunately James started retracting stronger than his baseline retractions but when he took a nap he didn't have any retractions. Then James woke up again and the retractions continued. At that point they decided to put him back on the Servo. 😥 The key is slowly adding one thing back at a time. If we just change everything back all at once and he doesn't tolerate something we won't know if it is a GI problem, respiratory issue, or withdrawal. If we add everything back and he tolerates, then we know it was solely an issue with the Reglan. Mom thinks that is the case, but the doctors want to make sure we rule everything out. GI possible p...

Tuesday, August 31st, 2021 James is 8 months old (4 ½ months adjusted)! He is super grabby now, loves people, and lots of attention. He's a people person (this will be great for his resume). When someone is using their stethoscope to listen to his lungs he always grabs their hand or finger. Once when he was getting an echo and he just put his hand on top of this guy's hand basically showing him how to do his job. 😆 He is fond of music and loves when people sing to him. He is trying to talk so bad around the trach. It will only be a matter of time!  During this journey James has stayed in three different rooms in the NICU and five different rooms in the PICU! He is always so curious every time we are transferring rooms looking around at things down the hall, in the elevator, and not to mention when he was at home for a short bit. He really did love his car ride.  Even though it will be nerve-wracking to make the journey home again, we are ready! Loading up the stroller, then l...