Today Charlotte had her tummy catheter replaced with a MIC-Key or what I like to call the “flip-top.” We put the extension tube in when we need to feed her and we leave it in overnight. It’s very odd to undress her and see this flip top there. Somehow it is stranger than the catheter tube sticking out of her belly. Maybe because it is more permanent?
I had my first really negative experience at the hospital yesterday. I was actually quite mean and rude to an x-ray technician–the first time I’ve been mean to any of Charlotte’s caregivers in 8 months. Basically, after Terry changed the button, we needed an x-ray to assure that the tube was well-placed. Until the g-tube placement was confirmed, I could not feed Charlotte. We had to wait 3 hours for the x-ray. 3 hours. Between the x-ray and the procedure Charlotte had no nap and waited +7 hours between feeds. I was livid. I’ll let you all use your imagination about how I reacted.
Charlotte continues to fight her bottle. She’s eating a bit more for me, but still utterly refusing Philippe. One of her new favorite tricks is to grab the bottle, swing it around, put it in her mouth, not suck and then laugh at us.We had a long conversation with her pediatrician and several discussions with her Feeding Therapist and the GI doc’s nurse. Based on all of their input we’re working on getting an appointment at the Feeding Team Clinic at Milwaukee Children’s Hospital. While Children’s Memorial Hospital in Chicago is a wonderful hospital, Charlotte’s feeding issues may be better served by the integrated team approach at Milwaukee. She’ll be evaluated at the same time by a team of folks. Hopefully we’ll get to the bottom of this strange behavior of the past six weeks and get some idea about how to resolve it.
Remember…don’t try to tell me that this darn thing is cute.