The Journey of James Weston

Saturday, August 7th, 2021 Mom got to sleep from 2:30am to 5am. James woke up right on schedule at 1am and 5am. Hopefully he doesn't do his thing where he only goes in 20 minutes spurts from 5am until 9am. Doctors switch on the weekend. To be honest, this doctor was pretty rude to Mom today. He told Mom that she needs to stop fighting him (which he means stop asking questions, there is a language barrier) and just agree to whatever he is saying. He said there is no reason she should be looking stuff up when she could just ask them to explain something (but yet, don't ask questions?!). Mom was literally like 🤯. Sorry, but we will always want to understand what medications and procedures our baby is going to get. We will ask questions and we will research on our own, always.  The LTV The doctor had him do 10 hours during the day and plans to do 10 hours at night. They also realized that he had the wrong settings the whole time! Which is actually a good thing. The sensitivity was...

Friday, August 6th, 2021 James had OT and a bunch of stop-ins with their clinical notes below from the hospital portal. No issues overnight. Tolerated LTV x8hr x2 yesterday and overnight. Remains on same respiratory medications. No changed to methadone and clonidine. WAT scores reported as 0. Fluid balance +289mL. 1BM. Tolerated feeding regimen. No changed to calories/protein as of yet.  Update Notes from Nutrition, GI, and ENT Nutrition Designation : Pt meets severe PCM criteria for length z-score. However, per pt's length history, pt has always been in this range. Stunting vs h/o rickets and bone fractures Nutrition Recommendation : 1. Recommend change to previous feeding regimen of EBM 20 kcal/oz with 2 daytime feeds of Neosure 22 kcal/oz. This will provide additional protein 0.3 g/kg for growth and provide additional calcium and phos due to continued rickets --Neosure 22 kcal/oz, 120 mL over 45 min at 12pm and 4 pm, and then continuous feeds of EBM 20 kcal/oz at 35 mL...

Thursday, August 5th, 2021 Weight: 7020 grams ⬇️ (15lb 7oz) Forgot to update that James got his 3rd Synagis shot yesterday for RSV. Cigna sent us a letter in the mail letting us know that they are not covering these shots.  These are a little over $3,200 a shot. Yeahhh.... The approval process is tied to the dates of RSV season. An insurance company will not agree to the injections before RSV season officially begins in a location—or after the season ends. For this year RSV season was pushed back because I didn't happen in the winter months the basically happened in the summertime. This is due to everyone wearing a mask and quarantining and then everyone not. Infants and older adults at greatest risk of severe RSV can develop pneumonia or bronchiolitis or experience a worsening of their existing heart and lung conditions and may require hospitalization. So it's important James gets the shot! Mom spoke to James' Cigna Case Manager who updated her on all the stuff she is tryi...

Wednesday, August 4th, 2021 👩‍⚕️👩🏻‍⚕️Having a good Day shift and Night shift nurse on the same day feels like Christmas! 💩 In the morning we ended up giving James a glycerin because he had not had a bowel movement in 24 hours. This may not seem like long enough time to wait to use a stimulant but when he is constipated that can back up his full belly which will lead to him vomiting. He ended up having a small stool about an hour later. He did not throw up today! Mom has been on top of the venting. 👁️👁️ Something that we just recently found out is James has condition called variably conspicuous strabismus. What are the symptoms of strabismus? The main sign of strabismus is an eye that is not directed straight. Sometimes a child will squint with one eye in bright sunlight. In James' case he has Exotropia when one eye turns outward. It's barely noticeable but it's there. Over time this should correct itself as the eye muscles grow stronger. 🫀 EKG - A 12 lead EKG was ord...

Tuesday, August 3rd, 2021 RT woke James up at 2am trying to switch the CO2 sensor so Mom woke up and showed her how to use the wedge to disconnect the circuit. Then changed his diaper and vented. Back to sleep at 2:45am, 4:30am James desated but they just turned off the alarm remotely from the desk without coming in. Mom got up to see that James was drowning from water collecting in his circuit from the humidifier. James is never just desating in his sleep for no reason. Mom SDVed (suction, diaper, vent) and he went right back to sleep at 4:45am. The doctor decided that if he was still doing well at 4am, they would extend until 6am. At 5:15am he was drowning again and needed to be suctioned and vented. Again they were just silencing the alarm from the desk and not even checking on him. At 5:30am they switched him back to servo because he was agitated (or was it because he was upset from drowning?). Mom let the RN know that when he is desating at night it's because he needs help, an...

Monday, August 2nd, 2021 Weight : 7140 grams (15lb 11oz) Height: 22.5 inches Couple of upsetting things overnight: Alarms going off and nurse is not coming in to check on him We wasted a ton more breast milk again I just dumping full bottles into the feed bag without measuring. At one point there was 8 hours worth of milk in the bag. Breastmilk isn't supposed to be out more than 4 hours. Trying to do x-rays in the middle of the night even though mom has already communicated that James is a hands off during the night. He actually text said "oh yeah I said the order says 8:00 a.m." 🤦🏻‍♀️ We had a new nurse today, new to us and new to nursing. She was nice. So James ended up getting an x-ray of both wrist and his lungs during Day Shift. Wrist x-ray results:   FINDINGS:  Zone of provisional calcification in the distal ulna and radius is less well-defined than 1 months ago and distal radial ulnar metaphysis appears slightly frayed. No cupping or fracture. Slight deformity of...