Day 171 - Sleepy James & 5th G-tube out

Saturday, June 19th, 2021

James has a good night but we think that the week has caught up with him so today he was very sleepy. He is resting up for surgery on Monday.

He started out being held by his RN, then by Mom, then we tried him in his seat, then laying on his side, then the boppy. 

When we were prepping him for his bath, taking off all of his gauze and tape off around his G-tube the balloon shot right out. The balloon probably deflated the day before but it was being held down by all of the gauze and tape. Mom immediately grabbed the rub rubber catheter (you can see tape to the wall behind James' head). It is a 16FR so much bigger than the hole you would think, since the button that you will be getting on Monday is a 14FR. However when Mom stuck it in it pretty much fit. The RN proceeded to wipe down James since he still needed a bath, but we knew that wasn't going to happen now in a tub! We waited to hear back from the charge nurse, nurse practitioner, and surgery on what to do. We had a doctor come in and insert one of the backup MIC-KEYs that was a 12FR - 1cm. Now we need to get another one of those on hand just in case. What's crazy is that right after this happened Mom saw another person on the BPD Facebook group post about how their button popped again as well and they wanted to know what to do. She suggested for them to get the MiniONE non-balloon option, James will be getting on Monday (recommended to her via a Facebook Mom). The doctor on call recommended we check the placement with contrast and have Radiology do an x-ray bedside. As long as James had his pacifier he was fine.

James did really well throughout the whole process. Poor baby shouldn't have to go through this day many times! It blows our minds that this is the first baby with BPD ever to be popping balloons in this hospital when there are so many on this Facebook group all over the world experiencing the same thing. The reason we don't think this could be manufacturing defects is because this isn't happening to every baby just the BPD ones. We will see! 

James after his new button was replaced.

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