The Journey of James Weston

Tuesday, July 20th, 2021 If Mom wasn't here, what would have happened? Would we even know what went down? Forgotten Feeds... First, it's 10pm Monday night and the feed pumping is alarming. Mom let the new nurse know that the alarm is going off and she needs more milk. This is a continuous feed. She let's Mom know that she actually didn't have any thawed but it should only take 5 minutes. At 11pm, she pops her head in and asks if we need anything. Mom reminds her that we are still waiting on the milk. She then realized she forgot again. So James didn't get fed his 40mls that hour. This was also the time he did his LTV trial on night shift. No Vent Heaters... At 8:45am, Mom noticed the Vent Heater was off and his circuit was cold. The heater runs warm oxygen through the tubing. Humidification is needed by all patients requiring mechanical ventilation via an artificial airway. Heated humidifiers operate actively to increase the heat and water vapor content of inspired ...

Monday, July 19th, 2021 Weigh-in: 6580 grams (14lb 8oz) Measurements Head: 40 cm Abdominal: 48 cm Length: 53.5 cm (looking to get a more accurate measurement by using a board next time) Vent Settings FiO2: 35 PEEP: 12 Rate: 25 Tidal Volume: 60 Today the plan was that Dad was going to relieve Mom from 11:00am-2:30pm, so he just happened to be on his way to the hospital in time for the LTV trial at 11am. It was great that we could both be there to witness the success! James did great on his first try. The LTV is an older home ventilator, everyone calls it a dinosaur. The only concern is that the pulmonologist mentioned that they don't make replacement parts for it anymore. After a lot of Facebook research Mom has seen that there are quite a few babies that have failed on the trilogy but have been successful on the LTV. So maybe they're still making parts for them? The difference in these 2 ventilators are the circuits single vs dual limb. Currently James is on the Hospital Servo ...

Sunday, July 18th, 2021 Last night Dad slept at the hospital so that Mom could get a night of sleep at home. Not so much for the bed but that it's more than 3 hours of sleep. Can one full night of sleep a week get Mom all caught up to continue 6 days of 21 hour shifts? We will see.  Around 1:30pm Dad did trach ties with the nurse. As the nurse suctioned him he gagged and then spit up. This wasn't really a vomit as much as a spit up. They were unable to continue with trach care and would resume again at 3:15pm along with a bath. We held off on the miralax this morning as well as the milk of mag last night, but we did continue with the prune juice today at 11am and 4pm.  Around 5pm, Mom noticed that his G-tube was leaking through his onesie so she changed that redressed his stoma with a new split gauze. He had several wet diapers also. At 6:20pm James had a massive diaper. Mom was washing her pumping bottles and syringes and heard James make some of the loudest bowel movements. ...

Saturday, July 17th, 2021 James projectile vomited again at 9:20am on the dot⁉️ WHY??? No one knows why this is happening every morning. This didn't happen in the NICU. We've gone over everything and nothing seems to be the culprit. The feeding times and feeding schedule has not changed. He's on the same amount of methadone and clonidine as he was when he was in the NICU. GI stopped by this morning and suggested that we continue his 6pm-6am continuous feed until 9:00am. And then only do two bolus feeds at 12:00pm and 4:00pm. Maybe at six and a half months BPD babies just start not tolerating their feeds...? Mom reached out to the Mom's of Trach Babies - BPD Facebook group and it looks as though this is pretty common. Some new suggestions could be using a probiotic instead of miralax or milk of magnesia. Also decreasing the amount overall yet supplementing the calorie count with Elecare which is a hypoallergenic formula with amino acid proteins instead of milk proteins. ...

Friday, July 16th, 2021 James did not throw up this morning! He had been every day this week around 9am. Mom diligently kept her eye on the clock and made sure that all the things were done to help James keep his food down. These things are: making sure James is sitting up, making sure his legs and feet are not pressed up against his belly, making sure the ferral bag is unclamped, making sure all the clips are on clamped on his feed bag tubing, making sure not to suction him when he's gagging, making sure the nurse did not put any medications in his feed, etc. After Mom held James to calm him down, he sat up in his Fisher Price Sit Me Up as well as his Boppy. He listened to a bunch of lullabies on a YouTube channel called Baby Bum. His favorite was "Head Shoulders Knees & Toes" since that is the song his primary would always sing to him. James listening to his lullaby. G-tube leaked because the leads were pulling on it. P.S. You can email James your love and support a...

Thursday, July 15th, 2021 Starting off needing to vent about the miscommunication in the PICU... Clinical Notes for the day: James presents to the pediatric ICU with a history of feeding intolerance requiring G-tube feeds. Feeds paused due to intermittent emesis- which initially resolved. Emesis resumed and GI was consulted. They recommended running feeds over a slower rate but parents did not want that. He is currently tolerating goal GT feeds: 20 mL Prune Juice BID (11A and 4P) +Bolus feeds 120ml over 45mins: NeoSure 22kcal at 8am, 4pm, and EBM at 12pm +Continuous feeds EBM 40ml/hr 6pm -6am. He is intermittently constipated for which milk of mag and miralax was started. He went 48+ hour without a bowel movement. Mom did not want glycerin suppositories used but after extensive time without BM she was ok with a mineral oil enema. He stooled well post enema on 7/15/2021. Please note that both sentences are red and completely made up. 1) We were told that the PICU team did not agree wit...