Happy Holidays!

On behalf of the Ellie Bellie Bear clan, I would like to wish you all Season's Greetings and Happy Holidays!  May your holiday season be filled with love and laughter and family.  May all of those who are traveling be safe and warm.

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The Recovery - cecostomy tube

Yesterday was a bit rough, but for the most part she was doing well.  First, I forgot to mention a little snafu during the surgery.  Typically 2 sutures are put in to hold the colon to the abdominal wall until scar tissues is built up.  Apparently, there were "technical difficulties" (doctor's words, not mine).  The two sutures didn't "deploy" (don't ask me what that means).  He was able to get one suture in.  The surgery goes "well normal one of the sutures pops out so it is okay to have only one".  Um, if one pops, what happens if her only suture comes out??

Yesterday was post-op day 1.  Her abdomen kept getting distended and quite hard.  The doctors were a bit concerned, but were relieved that she showed no signs of fever.  A fever and distended abdomen can point to an infection or the beginnings or peritonitis. She also wasn't peeing on her own.  She has a history of urinary retention, but we hadn't really had any issues with it.  She had to be catheterized 3 times.  Each time she was cathed, her abdomen would get a little less distended.  She also stopped drinking so we had to start IV fluids. The most exciting part of yesterday is that we got to escape the room and go for a little wagon ride.  She was pretty subdued, but I could tell she was relieved to have a change of scenery.

As of this morning, she is doing much better.  She peed overnight on her own!  Her abdomen is also much improved.  Less distended.  Less firm.  More active bowel sounds.  She is still refusing to drink, but we may stop the IV fluids to see if she gets more thirsty. I am hoping to take her for another wagon ride and see if the playroom is open today.  I think getting up and about will help with her recovery.

We are here until Sunday (surgery was Wednesday).




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Surgery - cecostomy

Well it finally happened!  Today Ellie had her cecostomy.  She will be in the hospital for the next 3 to 4 days.  The surgery went well with no complications.  She is in pain which is being managed with pain medication, but as soon as it wears off, she becomes quite combative.  Here's to hoping that this post-operative period goes smoothly with no complications.

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The Pre-Surgery Debacle and Ridiculousness

The Pre-Surgery Debacle

Friday 12/2:

This is the big day!  The day for bowel prep.  A day where we administer a gallon of GoLytely through a NG tube in hopes of clearing out Ellie’s colon in preparation for Tuesday’s cecostomy.  Or so I thought.  Friday morning we show up to patient administration for hospital admission.  We had seen Dr. R in GI the afternoon before and we should have been good to go. Only to discover that Dr. R never put in the orders for admission.  Dr. R is, of course, now out of town.

After much calling around, one of the GI nurses was going to put in the orders.  So we waited.  And waited.  Said nurse went into a meeting first and then got around to putting in the orders.  We waited some more. They neglected to call the unit to get a bed.  More phone calls.   They get a hold of Dr. S who is actually the doctor who performed Ellie’s colon manometry and recommended the cecostomy tube placement.  Apparently, she doesn’t need to be admitted on Friday.  Saturday is good enough.  So after pulling Ellie out of school and wasting an entire morning, Ellie and I head back home.

Saturday 12/3:

Ellie gets admitted!  For real this time.  I was apprehensive when we showed up, but it all went smoothly. We get the NG tube into her.  She doesn’t fight us much.  We watch Mickey Mouse’s Choo Choo Express 12 times while coloring in a Color Wonder book for hours.

Plus, she starts to poop in the late evening!  Yes, of all the things to get excited over.  Pooping.  A bowel prep is loads of nastiness fun.  The goal is to be literally pooping water.  As in clear fluid.  That is why we need Monday to be a day of “drying out” so to speak.  As I am helping the nurse change her sheets for the 3rd time, I discover a few interesting orders in Ellie’s patient chart.

Jello. Popsicles.  Broth.  Water.  Juice.  All of those are considered a part of a clear liquid diet.  Ellie was to start a clear diet as soon as the bowel prep started and continue until Tuesday.  However, some genius resident decided to change that order to nothing by mouth, NPO, as in she can’t even drink until after her procedure.  I had the nurse pass along to that resident that  I will be not following that order.  I am not a big fan of detrimental health effects related to dehydration.  Plus, what is the point?  She is getting GoLytely pumped into her stomach.  The whole idea behind NPO is to keep the stomach empty.  Score 1 for mom because she changed the order back to Clears.

The whole plan, to my understanding, is that we would go in for a bowel prep Saturday - Sunday and then get discharged Sunday afternoon.  Tuesday morning we would report to radiology.  Apparently, according to the orders in Ellie’s chart, we would not be going home until after her surgery.  We would get to hang out in the hospital just for fun for Sunday and Monday night even though Ellie had no medical need to be there.   There was a theory that this decisions was related to insurance. That if they discharged between the bowel prep and the colon surgery, insurance wouldn’t cover the bowel prep.  

The resident called the case worker.  She couldn’t help.  She called financial services.  They never called back or weren’t even in the office with it being a weekend.  I call Cigna.  I explain the situation and Cigna informed me that there is no reason why we couldn’t be discharged to home and return Tuesday.  I had her check with her supervisor who confirmed.  I also have a nice reference number and a note in Ellie’s Cigna account too to cover all my bases. 

The on-call GI doctor finally stops by the hospital room as we are watching Mickey Mouse’s Choo Choo Express for the 21st time (I am not exaggerating) and playing with sight word flashcards.  Apparently, she thought we were staying through the procedure because of 1. Insurance and 2. Because Dr. S said we might as well just stay.  Um, right.  The on-call GI doc calls Dr. R who is out of town who says “oh yeah, she can go home”.   

Finally!  Discharged to home on a clear liquid diet until Tuesday.

Tuesday: 

Surgery day. . . or not.  We presented to radiology at 7 am today for an abdominal x-ray.  This is to look at the state of her colon.  Is there too much fluid in there? Too liquidy?  That answer to that question is, yes, she is too liquidy.  So surgery has been postponed to tomorrow provider her colon is in the right state tomorrow morning. 

I nearly cried when I heard.  We have been waiting 6 months for this surgery and it is delayed again.  I am anxious that we will show up tomorrow and hear the same old story.  That her colon isn’t in the right state to proceed.  This entire process has been ridiculous!  At this point, it would have been much easier to have done it back in September laparoscopically.

Please pray, thinking positive thoughts, or send positive vibes that all goes well tomorrow.  That her colon is okay and that we can proceed with the procedure.

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