Tuesday, September 8, 2015

Follow the Rings to the Hospital

Brayden is back in the hospital (thankfully not in the PICU).  Brayden GI system, is just not sending enough poop.
It started last week.  Time for more testing.  Sitz marker testing.  We came to Children's in DC to start.  Little round rings go through his GI system.  The little rings are in a capsule, that would be swallowed.  But since Brayden cannot swallow, the GI doctor removed Brayden's j-tube and one by one, shoved all 24 rings through the j-tube hole, into Brayden's intestine.  The rings are inserted to watch their movement through the GI system.
  • Day 0, Tuesday Sept 1 - sitz markers inserted.  Abdominal x-ray taken immediately after the rings were inserted to provide a baseline.
  • Day 1, Wednesday Sept 2 - X-ray needed.  I convinced them to not make us drive to Children's in DC for just one abdominal x-ray.  The GI team gave me order to use at any local Inova Hospital...well that did not work out so well, our local Inova was freaked/overwhelmed at the registration desk and it took hours for them to approve Brayden, get the correct orders to their liking and finally go back to wait for the x-ray.  X-ray done, all 24 rings were visible and very little movement in his GI tract.
  • Day 2, Thursday Sept 3 - X-ray needed.  Back to Inova and we have to register again, ugh (apparently their system only holds it active for 24 hours then we have to register again).  X-ray done, all 24 rings still visible and still very little movement.  At this point we could/should see less and less rings.
  • Day 4, Saturday Sept 5 - X-ray needed.  Thankfully the weekday staff let the weekend staff know we were coming and things went a little smoother.  But x-ray done and still we could see all 24 rings.
  • Day 7, Tuesday 8 - X-ray needed.  Had to start the registration all over yet again and it confused the daylights out of the office staff, again.  X-ray done and we could see 22-24 of the rings.  All of the rings should be out of his system by day seven.
I emailed the GI team basically describing all the details above (minus the pain-in-the-butt registration).  I was instructed to give Brayden an enema at home, to see if any rings would make their way out.

Enema given this afternoon and no rings made an appearance (oh that is fun sloshing around in an enema/poop filled diaper, jealous, I know.  Meanwhile the GI motility team was working on Brayden being admitted to the hospital.

We called the GI motility team, they told us to head downtown to Children's for Brayden to admitted.  They want him inpatient to clean him out and do more testing.  Since the last time Brayden's was cleaned out, he did not handle it well...we ended up in the PICU.  The doctors will be closely watching his blood work, specifically his electrolytes.  He will not be fed through his j-tube, only given IV fluids.  They will be working on cleaning him out (not sure on the method of that yet, oh I could not be a nurse for this, handling all the poop).  Then he will be set up for more testing later this week.  And of course, more abdominal x-rays.

How does Brayden feel about it all?  Well, he had a temper tantrum so big that his flailing in defiance almost sent him out of his chair.  I tried to load him for another day to the hospital for x-rays and he was not having it.
But thankfully he is now, relaxing in the hospital bed watching Aladdin.

A bonus in it all, the parking attendants here at Children's start to recognize you after a while, since we have been here too much lately.  And apparently that comes with perks.

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