This past Sunday, Ellie decided to remove her cecostomy tube. She went in her room for one minute and walked out into the kitchen completely naked, minus the tube. I about died. This of course necessitated a trip to the ER where they are to insert a Foley catheter (a urinary catheter) into the hole to keep it open.
The thing is, we couldn't find the tube. I mean she had to have just removed it. Right?! Maybe. Did she remove it earlier and we just didn't notice? We checked her clothes, all the rooms of the house, drawers, the trash can and nothing. How did it disappear? Also, how she get this tube out without any pain is beyond me.
My parents were visiting so it was mom, dad, Andrew and me all accompanying Ellie to the place of germs. I discovered a few things: 1. a cecostomy is so rare that the docs had never heard of it; 2. it was up to me to educate them on what a cecostmy is, what the tube looks like, what size catheter to use, and how far to push it through the hole. That being said, they were really good about contacting the radiologist on-call.
It wasn't a bad experience. For mild "emergencies" you can schedule an appointment. Yes, an appointment at an ER. They took us right away. The doctors saw us right away. They placed the tube right away. The X-ray confirmation occurred quickly. Then we waited another 3 hours.
|Sorry for the gross picture. This is when she had the infection. |
Anyway, this is what the tube looks like outside the abdomen.
The normal protocol for when kids pull out their cecostomy tubes (apparently this is relatively common according to interventional radiology [IR] ), you place the catheter and then called IR the following morning to get on the day's OR schedule. The ER docs decided they wanted her on the schedule before we left the ER. At first they thought they could do it that day through fluoroscopy. Then they realized that they were not sure they had the correct size tube. Then they worked on getting us on to day's surgery for Monday. They got it all worked out.
Monday, I call IR and request that they double check to make sure they have the cecostomy tube in the correct size. Apparently, the tubes were under lock and key over the weekend which is why the ER docs couldn't figure it out. The tubes are always in stock according to IR.
|I don't know why she was so excited.|
Day surgery went well. We have decided to keep her tube covered with heavy tape and gauze and to deal with the skin issues that will arise because of bandages. The IR nurse gave us an abdominal binder to also cover the tube. I cut it down to size and it goes from her lower ribs to her hips. Ellie does not seem to mind this.
I am anxious and paranoid. How are we going to keep this thing in?! My thought that if it comes out before a year is up, we should just let it close and I talk to GI about the Malone procedure instead. The Malone procedure involves bring the appendix to the belly button and then you catheterized the belly button. The enemas would go through the catheter. There is no button, no equipment. I will be squeamish.
As for where the tube ended up . . . well let's just say Sophie dog had it in her mouth the following morning. Yuck!
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