Day 152 - More Friendly Visits & a Rough Night

Monday, May 31st, 2021

Monday is weigh-in day! Today James gained more weight. Currently at 5245 grams (11lb 9oz) gaining 70 grams. We also increased his Tidal Volume from 50 to 53 based on his weight gain.

James had pretty bad newborn rash for several months. It is also a combination of having BPD episodes where he sweats a ton. We tried everything including cleansing water, eucerin, saline wipes, etc. However James's face has been clearing up due to Breastmilk! So Mom will now be offering this at $2.00/ounce. Here is Mom's PayPal Link. 😂

James had slept for the majority of the day. 

In the afternoon, James had visits from Grandpa Don and his girlfriend Dee. They took turns since we can only have one visitor with one badged parent at a time. They both got to see what it was like for James to have a BPD episode. It's a lot..

Night Shift: James had a pretty bad event at 9:55pm to 10:15pm. BPD episode with bradying and desating. You could hear the sound of his hernia swishing as he was bearing down. That has to be painful! 🥺 What's crazy is that there was no alarm for his Oxygen going off when he was desating. When Mom pointed that out we found the alarm range was set so low that James would never set it off. Why would someone change the thresholds?!

James had another bad BPD episode at 10:45pm. After that he was pretty inconsolable the rest of the night into the morning. 😢 He was crying because he was in pain. Not a BPD episode, just upset. We think it is either his hernia, distress from a trach infection (increase in secretions), gas, or reflux. Mom thinks it's combination of the hernia and a trach infection. Now we could take a sputum culture to see if there is bacteria in the trach but it will show that there is. It is common for tracheostomized children to have their trachea colonized by bacteria. This colonization can increase the risk of infection, usually by the same agent present in their respiratory tracts. So do we want to just give him an antibiotic if he doesn't have many symptoms (increase in oxygen, increase in number of episodes, fever)? Mom thinks that the numbers of episodes has increased though! We don't want James to get immune to antibiotics when it's not necessary.

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