Day 132 - Too Much, Too Fast

Tuesday, May 11th, 2021

Good day overall. Tomorrow we change Doctors again. Today we had James had 3 really heavy dirty diapers this afternoon. We were waiting for those! Wouldn't be surprised if he loses weight tonight.

Changes:

• Gained more weight - now at 4500 grams (9lb 14.7oz). He has been gaining a little too much too fast; it's not a healthy gain. So although we are increasing to 110mls we have switched out a formula feed for a breastmilk feed. So 4 Breastmilks (20 calories) and 2 Formulas (30 calories). 

Mom and Dad did the trach tie changes again themselves. We feel confident in this process but will only get better the more we do it. Tomorrow is the trach change! Scary for us, but we are going to attempt this together tomorrow. We will need to effectively communicate who is doing what. Who is pulling the old trach out, who is putting the new trach in, who is disconnecting the oxygen, who is reconnecting the oxygen. Those are the main steps that need to be identified and practiced prior.

Dad recently bought James a fan that attaches to the crib. With the BPD sweats it's super helpful to cool him off. We try to keep James in light weight clothing and unswaddled to help with these episodes.

Also tomorrow! Juju and Aunt Robin will be coming to visit, since the visitation policy has changed! Champ and Tommy are also coming. We haven't seen our puppy since earlier February! Pretty sure he is having the time of his life in Jacksonville though. 

 

Chillin' in the Lanai - looking for lizards

Mom held James in the late afternoon and tried to keep him awake, which didn't last too long.

Tuesday night was pretty rough. James had an episode about every 20 minutes. Mom didn't get any sleep, which doesn't help her already being on antibiotics. The nurse nextdoor was super helpful in constantly coming in and in knowing what James needed. Below is a video recording of the PEAK alarm ringing (please turn your volume up). When you hear this alarm there is a 95% chance that James is very agitated and is having an episode. He can set off the PEAK alarm off without bradying or desating. This was the one and only time Mom did not get up last night to handle since there were 2 nurses in the room at 5:45am.

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