Of course things couldn't be easy scheduling-wise. After all, nothing has been easy about this journey so far. A journey that started nearly 6 months ago. Gastroenterology is in charge of the bowel prep. Interventional Radiology is in charge of the cecostomy procedure. GI wants to admit her on Friday for an overnight hospital stay to administer a gallon (at least) of GoLytely through an NG tube (a tube that goes from the nose to the stomach). Surgery would commence on Monday. However, the GI doc is out of town on Friday. We didn't know this until after the office visit was scheduled. It does look like we can have the visit on Thursday afternoon and still be able to admit her on Friday as planned.
Surgery is/was scheduled for Monday 12/5. I get a call earlier this week. Dr B is not going to be in on Monday. Surgery is moved to Tuesday 12/6. To say that I am annoyed is an understatement. I know that pushing it back one day doesn't seem like a huge inconvenience, but that is one more day that we have to starve Ellie. No food from Friday - Tuesday post-surgery. We are starving a child who has failure to thrive. Where each pound gained has been an ongoing battle and now we deprive her of food for over 4 days! I am trying to negotiate with IR and GI, but with the Thanksgiving Holiday I am still waiting. My hope is that they will let her eat Friday. Or that the GoLytely will make her feel full on Friday and Saturday.
Eight to 10 days later Ellie will have a post-op appointment with GI. After this visit, we should be able to start the antegrade enemas. Basically, we administer a ridiculous amount of either water, salt water, or ducolax crushed into water through the cecostomy tube. This allows us to clear out Ellie's colon from the top rather than going rectally. Six to 8 weeks post-op, Ellie goes into day surgery for the placement of a permanent catheter called Chiat Trapdoor. After that, we should be good for 11 months which is when the catheter will need to be replaced.
I am nervous. Nervous about her pulling it out. This must be a common thing because at the consult, the first thing the IR nurse talked about is what to do if the catheter is pulled out (you insert a feeding tube into the stoma and then call IR for tube replacement the next day). I am nervous about the dressing changes. She is going to be so sore and I know she won't want us fiddling with it. My thought is that it will take both Andrew and me to perform the dressing change. Drew can hold her down because he might gag when he sees the cecostomy.
I am hoping that the next time I update y'all Ellie would have had her surgery. Please pray or send positive vibes that her surgery does not get delayed. . . again. That her bowel prep goes okay and her colon is in the "right state" so that surgery can proceed as planned.
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