Day 86 - Care Conference Day

Friday, March 26, 2021

Today we had our Care Conference that went really well. We met with the Pulmonologist, our Social Worker, NICU Case Manager, PICU Director, PICU RN, our Patient Care Advocate, and our NICU Doctor in a conference room for an hour and a half. They answered a lot of the questions that we had and now we feel more informed and very supported.

In summary, we left the meeting getting his surgery scheduled for about a week from now. They will be doing a tracheostomy and a g-tube at the same time which makes scheduling tricky finding availability for both doctors.

His weigh-in tonight is 3050 grams (6lb 11oz)!

A few of the questions we prepared for the Care Conference and the answers we received.

• What are the stages and steps to get discharged and go home?  James needs to be at 5,000 grams in order to get on the home ventilator. His ventilator settings need to decrease.
• What is the timeline for ahead/behind compared to other children for brain function and behavior? If it’s 2 years of age, what’s significant about that age that the normal child has adapted to?  Is there a new timeline to catch up due to having the trach? As a micro preemie he will mostly likely be behind the 2 year mark.
• What are the different therapies for follow up?  PT, OT, speech, etc?  Weekly for several years
• Is his chubby neck a concern? No, they've had fatter, lol
• How does nursing and bottle feeding work with the trach?  What can make it possible for managing the flow to make breastfeeding possible? Sham feeding process? It's a possibility down the road, but all dependent on the baby.
• Are there extra vitamins that can support recovery? Vitamin A?  Lasix? Any Stem cell treatments available? Not in the US at this time
• How do we ensure that James will come back to the NICU? James will spend a week in recovery in the PICU, and then come back to the NICU. Once he reaches 5,000 grams he will go back to the PICU.
• Is there a PEEP discharge target number? No, but 10 would be ideal
• Is there a BPD/Trech support group with other parents? The pulmonologist was going to reach out to a family for us to see if they are willing to connect.
• Since BPD lung walls are thicker, can we try higher pressure? Ventilator settings will change as he gets bigger.
• What are signs that his heart is getting too much pressure to it? They would see this in an Echo
• Why have 1 year on trach without the vent? Although they may not be ventilator dependent they still may be requiring oxygen at night
• What is the pumping accessibility in the PICU for mom?  Is there a pump? Is there storage?  Fridge? Milk room? There is a breast pump and storage available
• What is the visitor policy? In the PICU, parents can visit. After 9:00 p.m. only one parent can stay. There is a chair that you can sleep and a shared bathroom down the hall.

Cute onesie from Dean and Jenn 🌞

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com