Day 120 - Custom Trach Ordered & Hernia

Thursday, April 29th, 2021

Last night weighed in at 4050 (8lb 14 oz)

Tonight 4105 grams (9lb)!

Today's events:

9am Physical Therapy

• Goal is to keep his arms and hands forward. Either with a rolled up towel or by pressing at his shoulders forward.
• We also need to put together a day time schedule of activities James can do to help with light cycling.

10am Bedside Update with Doctor

• James officially has hernia. The Doctor had Mom feel it. It makes a very loud squishy sound when you push the intestinal loop back into the abdominal wall. So James will definitely need to have surgery, but they want to wait closer to discharge so that he is bigger.
• We started microweaning the methadone in the afternoon.

1pm Speech Therapy

• James had several episodes during this. He really does love his pacifier and milk but was having a hard time due to the lung spasms.
• Goal is for Mom/Dad to hold James daily. Try to have as much skin to skin as possible. Even if this is simply James' head on our arm.

1:30pm Hold

• Mom held for an hour since it had been 5 hours since her last pump. 😮 James slept like a baby. 👶🏻

3pm ENT stopped by

• She let Mom know that the custom trach was ordered and should be arriving shortly. This new trach will be longer. They made the determination that he needed a longer trach due to the last x-ray showing he had more room.
• After the new trach is placed they will be doing a bronchoscopy to see if James has tracheomalacia. That is when the walls of the windpipe collapses. Tracheomalacia in a newborn occurs when the cartilage in the windpipe has not developed properly. Instead of being rigid, the walls of the trachea are floppy. Because the windpipe is the main airway, breathing problems begin soon after birth.
• The hope is that the new trach will allow games to get more air directly and deeper into his lungs.
• Mom noticed that on a lot of the Facebook groups kids had something called subglottic stenosis, so she asked ENT if that was something she thought James had. They clarified that subglottic stenosis would present itself differently. 

4:30pm Trach Care

• This was the worst tie change so far. James was bradying and desating the whole time. The ties were not the correct size, so we had to refasten a few times. The gauze we removed had blood on it. We found he has a small cut underneath. 

Overall another good nurse today! But worst day so far regarding number of BPD episodes. James had 12 throughout the day! Found out during night shift that James didn't get his methadone until 5pm that was due at 3pm (mistakes happen 🤷‍♀️). That could explain though his back to back episodes from 3pm to 4:30pm. Because of this delay the meds are now pushed back for night shift. 

Night Shift went better than Day shift for James. Only a few episodes (4) during the night and early morning. 

*We'll need to take more pictures tomorrow!

#everyoneisexhausted

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