Wednesday, February 1, 2017

Weight Gain, Cecostomy, and Constipation

The Chunky Chicken is back!  Ellie's ADHD has been out of control.  She won't sit in her chair, is shoving things off kids' desks at school, and tearing pictures off the walls.  At home, she gets distracted putting on her shoes.  One shoe half on and "oh my goodness, I must go over there!".  She does great in the mornings, but in the afternoon, it is as though we never gave her the afternoon adderall.  Unfortunately, she has maxed out of the Adderall dosage-wise.  As in we cannot go up on the dose.  So we started a new, non stimulant medication.  The main side effects are fatigue (She is going to be at 6:30pm now!) and weight gain.  The weight gain is excessive.  She is gaining 1 lb a week and eating nonstop.  Sadly, the GI doc warned us that if she gains too much more, she may need to go on a diet.  Honestly, I think that she has already gained too much weight.  Yes, she had failure to thrive and needed to gain weight, but this is excessive and piling on too quickly.  It is unfortunate, because I feel like this new medication is working.  Yet, I have to weigh things - ADHD out of control or weight gain with the associate diabetes and high cholesterol.

In other news, where I last left off, Ellie hadn't had a bowel movement in 19 days.  GI wasn't coming up with a good solution or taking me seriously.  Well, after 21 days, they had us come in for an office visit.  The new plan was to give a SMOG enema through the cecostomy tube.  Usually, we put in normal saline.  A SMOG enema is saline, mineral oil, and glycerin.  These are the types of enemas we used to give Ellie rectally.  That night, I was supposed to give 180 mL of a SMOG enema followed by 180 mL of saline.  Well, I only got in 30 mL of the SMOG enema before the tube clogged.  Did all the oil and glycerin clog the tube or was there a big ole piece of stool blocking the tube?  I waited a while and was able to get some saline in.  I called GI in full on panic mode and asked if I could mix the 180 mL of saline with the 180 mL of the SMOG enema to make it less viscous and it worked!  I was able to get all of it in and we got results!

The following day Ellie had her Chait Trapdoor placed.  This is the permanent button in her colon.  It was a quick day surgery and she recovered nicely.  They used guided x-rays to place the Chait Trapdoor and we discovered that after 22 days, her colon was cleaned out!  The post-op nurse spent a great deal of time going over what to do if the button comes out.  Apparently, this is a common thing.  Yet, if you see what the Chait Trapdoor looks like, you'd think it would hurt if pulled on.

Chait Trapdoor

We are now doing every other day saline enemas and they seem to be working (I don't want to jinx this so I am knocking on wood right now).  Even though it has been nearly 2 weeks since the button was place, Ellie is still having a lot of pain when I open/shut the trapdoor and when I attach the adapter device.  I called Radiology to see if this amount of pain is normal this far out, but of course I never heard back.

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  1. That chait trapdoor does not look friendly at all. I'm glad she's gaining a little weight but will pray that side effect doesn't continue.

  2. I wish the doctors and the staff were more responsive to your calls. It seems they never know what's going on! I'm so glad she's gaining weight! I know it's been a long battle for you. I hope it evens out so you don't have to mess with medications for a while.


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