Day 201 - 1st LTV Trial Success! 💫 🙌

July 19, 2021

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 Ventilator and it is setup as a Dual Limb Circuit. It's what he's used to, which is why he does well on the LTV. Whereas the trilogy is a single limb circuit and James is not strong enough for that yet.

On a side note, James had Music Therapy 🎶 today and loved it! The girl sang and played lullabies on her guitar. It was great timing as we asked her to stay while James started his trial.

PT tried to stop in during his LTV trial so that was cancelled. Speech Therapy worked with James and Dad for about 40 minutes.

Update/Changes:

Completely removed miralax and milk of magnesia from his list of medications
Adding erythromycin which is for motility
GI doctor recommended replacing prune juice with lactulose. Mom spoke with the PICU Doctors to get their opinion and they all seemed to be questioning this. Although what was communicated to the GI doctor is that Mom wants nothing to do with lactulose. Lol
Short Term Goal: There is an order for 1 hour of an LTV trial on day shift in 1 hour on night shift. If James does well we will add on an additional hour to each shift everyday. Once reaching 5 hours we will increase the next day to 10 hours. It shouldn't take very long for James to switch over to the LTV if everything continues to go as smooth as it did today. The LTV is just a ventilator that we can use at home.
Long Term Goal: Get home on the LTV. At home James will grow. Lungs continue to grow until age 8. Once James' lungs are stronger we could switch to the Trilogy. Obviously there are benefits to leaving the hospital like decreasing his risk of infection, and being able to develop faster. Everyone says their babies thrive once they are at home.