Day 143 - Chat with the Pulmonologist!

Saturday, May 22nd, 2021

James started the morning with an episode around the 7:30am and was inconsolable. The two main issues today is that James has not had a bowel movement in a while, today is his third day. Secondly, James has been having very bad reflux. Spitting up large amounts of his feed and gagging/choking. He needs to be sat up quite often.

After his episode the nurse held him which he very much enjoyed. Mom then also held him. He did not want to be put down and enjoyed in a shoulder hold, face down or chest to chest.

James had several episodes throughout the day. These were all pretty severe with very rapid desats. And again very inconsolable. One issue is that his leads and pulse oximeter continue to not read correctly. The BPD sweats and him flailing around. It is super nerve-racking when he is having an episode yet all of the his stats just look like ➖➖➖ on the monitor.

We also met with the pulmonologist at the end of the day. This was his first look at James, besides going over his records and history previously. He answered a lot of our questions and although he could not give us an exact timeline he did let us know that it would be a while before we would be discharged. Like a lot longer than we thought. James has Super Severe BPD.

Again the timeline has to do with how James responses to the trilogy ventilator which is what we will use at home. James will need to be on lower ventilator settings and be more stable. Right now each week has been different for us, whether it is an increase in the number of BPD episodes or a change in medication or vent settings. Overall we should be heading back to the PICU since we will have better contact with pulmonology and GI there. After all at this point if we were to be at home and be admitted into the ER they would send us to the PICU not the NICU. James is now more of a PICU baby not because he is 5 months and almost 11 lbs but because he has a trach and g-tube. It will it will be a tough road ahead but we know the PICU is probably the right place for him at this point.

We are hoping to continue the mylicon gas drops, as those have been making a huge improvement.

Night:  James finally had a poop!  (After 3 days). It was a full diaper, but we are waiting for the explosive poop still.  Our night nurse is pushing for small amount of glycerin to help. We will see what the doctor says in the morning. 

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