Wednesday, September 16, 2015

Back to School, a couple of weeks late

But he finally made it.

Much like Carter and Luke, I think he was ready to go to school...get away from all our chaos, mom dragging him around for all kinds of house stuff, doctors, hospital and tests.  School sounds like a better choice.

Of course I attempted to take pictures but the little stinker would not acknowledge me or even bother to open his eyes.

Since our actual home is not ready yet, we are still in the temporary house where a bus cannot pick up Brayden (being on a busy road and driveway is a long gravel path).  I am taking him to and from school.  Brayden's school days/times are adjusted until we can get back home.  Basically I will get him to school when I can get him to school, attempting to make that happen three times week.  We also adjusted his hours to be shorter for a while since his school is not in our direct community and I need to get Carter and Luke to/from their schools/buses. 

Oh and Brayden's motility problems seem to interfere with school (and all other activities) so we are trying to factor that in as well...

Monday, September 14, 2015

What to do, for now

Brayden was discharged from the hospital (and hopefully no need to go back any time soon).
He completed the necessary GI motility testing (Barium Enema, Sitz-Marker Transit Study, Colonic Manometry, Anorectal Manometry).  All of this information should provide the doctors with more than enough data to decide the best long term plan for Brayden.

Brayden's motility is not so good, his final abdominal x-ray still showed those little sitz-marker rings still in his system (many days after they were placed).

We were sent home with prescription for potassium.  The hope is that giving him a daily dose of potassium will prevent him from having any significant troubles...after all we still need to get the poop out.  Brayden will continue to get Miralax daily and giving him the potassium should allow us do an enema a couple of times a week without putting him in danger (messing up his electrolytes too much).  And Brayden will have blood work done just to check everything.

We talked with the GI team on the floor, who was in communication with the GI motility doctor, as part of the discharge.  We know Brayden is in a holding pattern (literally holding his poop) till the best long term plan is decided.  So we posed the question to the doctors, "What would be the long term plan for Brayden?"

Then they said it.  I knew it was coming, it has been mentioned and we have danced around the subject for several months.

Brayden will need some sort of ostomy surgery.  There are three options:  Ileostomy or a Colostomy or Cecostomy (which doesn't really look like an option because his colon is not working much anyway).  After reviewing all of the tests, they will be able to assess which is best.

We will meet with the motility team in the coming weeks find out/decide which would fit Brayden's needs.  Then schedule whatever the procedure may be.

Again, I say, poop is important.  It has to come out one way or another.  But wow, I really do not want him to have any sort of ostomy.  I cannot let myself go in to the emotions of what this means for his life, but for now I can just say, it makes me sad.
On a lighter note, we learned that Brayden enjoys the movie Aladdin and Lion King at the hospital, perhaps from all of the music.  At least a little something he can enjoy for a bit and we may need to add those to his collection at home.

Friday, September 11, 2015

Heading Home

Not much left for the hospital to do for Brayden so he was discharged.

I will be back with the details.  But for now, no hospital!

Thursday, September 10, 2015

Colonic Manometry

Sounds great.

Before all of this, the only thing I knew about colonics, was a "special" cleansing that some people actually pay for at a med-spa/"special" spa.  Well Brayden and I know more about colonics than ever (and we will never voluntarily do it).

The doctors have attempted to clean Brayden out from every direction.  Last night and into the early hours of this morning, they attempted to push LARGE amounts of GoLytely through his j-tube.  That did not go well for many reasons but mostly because the amounts were causing him to gag and retch for getting too much.  Then the fluids were more than his body could handle.  His potassium had yet another hit.  The cleaning out fluid was stopped, yet again, due to the drop in his potassium.  He was given more potassium through his IV.  More labs done.  This poor kid cannot do a clean out.

The clean out needed to happen for two reasons:
First to just get out all the stool that has been stuck.
And most importantly to clean him out so he could have the colonic manometry test done.

The colonic manometry:
For this test, a flexible tube is inserted through your child’s rectum into the colon. The tube is inserted while your child is sedated, but the test is completed when your child is awake.  Colonic manometry is a test performed to evaluate children with issues including colonic dysmotility, constipation and stool soiling. This test measures the strength of the muscle contractions inside the colon (also called the large intestine).

The tube is attached to a monitor for 24 hours, while inserted in Brayden.

Brayden is was cleaned out enough to do the procedure for the colonic manometry.  By late morning he was taken to the OR, sedated and the procedure was about an hour, while he was under they also did an anorectal manometry and took pictures with a tiny camera with/while the tubing was inserted.  Then he spent time in post-op for monitoring.  Back up to his room and the monitor does its thing.
While hooked up they will try different medications, a little bits of food, etc. to see how his lower GI reacts.  And hopefully all will be recorded on the monitor and we have to fill out a chart as well.

Brayden has handle most of it pretty well.  Definitely some moments of discomfort and he is really giving off this don't-mess-with-me vibe to anyone that comes near him.

Wednesday, September 9, 2015

He Does NOT Like to be Cleaned Out

At least his body does not like it.

An abdominal x-ray was done right away last night, we could still see all of the things from the sitz marker testing.  An IV was placed (I demanded/politely asked for the IV team since he is still pretty poked and bruised up from the last stay).  Labs were done.  He is on gut rest, meaning no food.

Shortly after being admitted, the plan to clean him out was put in place.  Start with an enema and then colonic washes several times throughout the night/day, till all things came out clear.

Brayden made it as far as one enema and one colonic wash.  They were able to get some stool out.  Then labs were done.  He did not handle the enema and colonic wash very well.  His electrolytes were starting to take a hit.  His potassium was not looking good.

Everything was stopped.  They added potassium to his IV fluids and stopped any sort of cleaning out.  And he was put on more monitors.

Things settled down at some point in the wee hours of the morning.  I have no idea because I crashed out on the couch.

Morning came and time for the doctors.  In walks my not-so-fav GI doctor (really, this guy?) who was with us during the PICU stay.  He was the one who prescribed a daily dose of Miralax when he discharged us from the PICU a few weeks ago.  Well, clearly that did not work and we are back (which I tried to explain/reason with him during the PICU stay).

Thankfully this visit seems to be led by the GI motility team.  They do not work on the floor but they are working with this GI doctor to make sure we are all on the same page, in theory.

By the afternoon more potassium was given.  More labs done.  His potassium lab came back looking better.  So things have started back up but not as aggressively.  They are trying to clean him out with an hourly dose of GoLytley.  The GoLytley was started several hours ago (and will continue through midnight) but there has not been a bowel movement, ugh.

The goal is for Brayden to be ready for a colonic manomety test on Thursday.  This test should be able to tell us more specifics about the strength of the muscle contractions inside Brayden's colon.

Brayden has been sleeping a lot but he did not get much sleep last night.  He has been moderately comfortable, lots of gagging/retching.  His sleeping at least gave me the chance to head to the cafeteria and a quick walk outside.
Pray Brayden is ready for the colonic manometry testing done soon.  We need to get a full assessment of Brayden's GI system sooner than later so the doctors can start making a real plan to deal with his severe lack of motility.  Pooping is a very important part of life.

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.