All week we’ve been struggling with the MicKey.  It’s been leaky and irritated and obviously causing her a lot of pain. This darn thing has come out not once but twice and according to her feeding team normally they don’t come out.  After many sleepless nights, we decided to take her into the city yesterday to have it looked at and we were told that it was fine. She had a little bit of granulation around the stoma but it looked okay and so we came home with what we needed to stop the progression of the granulation. This morning we got up after another sleepless night and I looked at it and it looked like it was about to rip through her stomach wall. I called the feeding team and I emailed pictures and the verdict is that it is probably not a good fit. It may be too short so she was probably measured incorrectly. So this afternoon I took the MicKey out so that we could replace it with a temporary feeding tube until we can get into the city again on Monday to have her measured. I couldn’t believe what the stoma looked like, it is so irritated. I couldn’t replace the tube. I knew she’d scream so I passed the temporary one to Jason and I left the room.  Jason put the tube in like a pro! The stoma still looks pretty scary but the leaking has slowed down quite a bit and she seems more comfortable.

 

In the past 10 days my baby has had a PEG tube stuck in her throat, severe croup and a badly fit MicKey being inserted and removed from a badly irritated hole in her stomach numerous times. I think she’s due for a break.

This poor little baby seems to have to fight for everything. I wanted this one thing to be easy but it seems like nothing ever is.