Day 242 - ⚠️ Black Box Warning
Sunday, August 29th, 2021
Now that James is back on the Servo, he has some new ventilator settings:
PEEP: 12 (increased from 10)
FiO2: 35 (increased from 30)
Tidal Volume: 65 (decreased from 70)
Rate: 30 (increased from 25)
James had a fairly consistent high respiratory rate and heart rate throughout the day. He continued to receive sedation meds around the clock between Morphine, Ativan, Motrin, and Tylenol. As morning rounds progressed the doctor was unsure of what was wrong. Thoughts on it being withdrawal, GI issues, BPD. Possible tracheitis due to the secretions. He requested an echo for today. The doctor also suggests that we give James newer fresh breast milk vs milk from March. The only part of this that really sucks is that March's milk will expire in September.
Dad was able to do trach ties with the RN while James was calm for a bit. The feeds were stopped from 11 a.m. to 1 p.m. to give him a break. Then the plan was to do only Pedialyte next 12 hours. After 12 hours we would continue on breast milk only, unfortified and with no Pedialyte.
In the afternoon the Doctor had brought up a medication that was concerning to him. He was able to pinpoint where the source of James' pain has been...
WARNING ⚠️ ***REGLAN*** ⚠️
James was put on this medication the morning we were discharged. We had just replace erythromycin with it. So the first time James had this was at home. This is why we we're not seeing these symptoms and side effects in the hospital. Reglan is used for motility to empty the stomach; however, it was first developed as an antipsychotic in the 1960s.
If Reglan is the cause of all of this then that would be an excellent quick fix. Praying that there would be no long-term damage to James. However we still have an issue with the LTV ventilator having a very wet circuit and drowning James during the night. Mom is currently looking into the VOCSN ventilator and has reached out to a sales representative of the company. What it will come down to is insurance, a local DME provider of this particular ventilator that will also take our insurance, and the hospital of approving the use of a new ventilator they have never used before. Mom has been in touch with other VOCSN Moms on Facebook who have nothing but great things to say about it. They have no issues with rain out whatsoever. Not to mention the VOCSN is a 5 in 1 machine: Ventilator, Oxygen Concentrator, Cough Assist, Suction Machine, Nebulizer.
P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭
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