Over the past few weeks we have been struggling with kinks in Ellie's J-Tube and fighting to keep it going long enough the DME would deliver the correct feeding tube brand that she needed. After fighting with them, calling our case manager, and the national representative that has been assigned as a liaison in her behalf, we finally have the right feeding tube.
This feeding tube has only been in our house maybe a week and now her current one is kinked up to the point of non-use. So here we sit at John Hopkins Children's Center once again waiting for an IR placement on the schedule.
Knowing her tube was giving serious issues I had been trying to keep her extensions and button taped and secured in place preventing any movement. Ellie knew she was not supposed to remove the tape without letting mom or dad know first. However, in her excitement to play with her friends she had removed the tagaderm and duoderm without letting us know and ran out the door attached to her backpack and extensions.
The movement of playing, being a kitty, and other normal 7 yr old play, her j-tube became twisted and kinked. Yesterday her alarm began giving alarms at odd times and more frequent that normal. By 5pm her j-tube was twisted and kinked enough that even the syringe would not break the kink loose. About 5:30 her GI Dr. was emailed and we were on the road shortly after that.
This time to Ellie's excitement she was told she was going to be spending time until she got her new button. That excitement quickly disappeared once she found out staying also meant getting an IV.
Ellie did very well with her IV placement and while not happy, the nurses were able to get the IV in on the first try. She is doing much better with this aspect. Not long ago she was not able to be in the room when her brother got an IV, because she would have panic attacks just seeing the kits and seeing him get blood taken or IV's placed.
For now she is still sleeping...
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