Day 93 - Why did James get the Trach?

Friday, April 2nd, 2021

Bed is tilted up to help his lungs.

He has a lot going on.

Update: James is on a lot of meds! See photo below.

In addition, they have started James on Lasix because of fluid retention and edema. James is also getting a treatment of Mucomyst (via the nebulizer) which is added with albuterol to thin and loosen mucus. They are going to continue G-tube feeds at 14 ml/hr with EMB fortified to 22kcal. 

We are holding on weighing him since we would need to move him around for that. It will be interesting to see how much weight he has gained after this week. 

Vent Settings
FiO2: 45
PEEP: 10 (after the x-ray, they saw he was overinflated so they lowered this) 
Rate: 40
Tidal Volume: 24
PEAK: 29 (sometimes up to 68 at night!)

FAQs - Understanding Life with a Trach

Why did James have the tracheostomy and G-tube surgery?

In a nutshell, the tracheostomy was done for James' brain development not for his lungs. Although there are some slight improvements to the ventilator settings, his lungs will take a long time to improve. Now it's time to start focusing on his brain too. He is 3 months old (39 weeks gestational) and he has been confined to his bed, on morphine, unable to move this entire time. The tracheostomy is what will allow James to go home and develop. It is also easier and be safer.

Tracheostomy enables infants with severe bronchopulmonary dysplasia to live at home while still receiving respiratory support from a ventilator for a prolonged period of time. Being at home provides a more developmentally supportive environment. Babies thrive at home!

To understand more about BPD and tracheostomies, this is an easy to understand video put together by CHOP. https://youtu.be/72AloZyx4H4
*We are not at CHOP.

When will James be ready to go home?

James will be ready to go home when:

1. He is medically stable on a home ventilator (to get on a home ventilator he needs to at 5,000 grams)
2. Mom and Dad are fully trained in providing care
3. Private duty home nursing care is in place

What does the ventilator do?

The ventilator helps the child breathe better. It does this in several ways:

• By blowing air into the lungs, the ventilator keeps the airway open and helps the lung expand to avoid compression or collapse of the lung tissue (atelectasis) and improve clearing secretions.
• The ventilator can help bring more oxygen into the body and remove carbon dioxide.
• The ventilator can help reduce the child’s work of breathing which can make him or her better able to do activities and grow.

What is the "average" timeline like?
2 years on a ventilator; 3 years to get to decanulated

Will we be able to hear James?

James will not be able to cry or talk while the trach tube is in place. They will be silent cries. 😢 Air passes out of the lungs through the trach tube. It does not go through the nose and mouth, and does not pass over the vocal cords to make them vibrate. James has a cuffed trach, which means there isn't an in allowance for an air leak. Down the road, if his trach every changes to be uncuffed then James may be able to make sounds using the air leaking around the tube. We could then look into using a "speaking valve". Until then we will need to use sign language.

Will James be able to do the same things that any other child without a trach can do?
There are only a few activities that James will not be able to participate in, like swimming. He cannot go swimming or be under water because water would go directly into the trach tube and into the lungs. We also need to take special care to prevent small particles, such as dust, sand, and fibers from entering the trach tube and irritating the lung. James also cannot be around people who are smoking since smoke is a lung irritant. We will need to be extra careful with our Chihuahua Tommy, he sheds and we will need to make sure that the nursery is off limits for him. (There is information online saying that you can't have any pets in the home with a tracheostomy. But the doctors informed us that they have never asked a family to get rid of their indoor pet.) Thank the Lord 🙏🏻🐾🐕 ❤️

Will James be able to leave the house?
Yes, James will be able to leave the house and travel with the family. All of the equipment is portable and can function on battery power. There are pieces of equipment we will need to carry with us at all times when we go out of the house.

*****

Baby James wanted to give a shout out to Baby Dean in the NICU over in Jersey. 👶🏻 He says you'll be outta there in no time and make sure you ask for all the snuggles you can get. 🥰

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