Thursday, August 18, 2016

The Stinky Stinker

Brayden stinks.  In just about every way someone could stink (well, actually more than most).
  • Stool/mucus/who-knows-what is still coming out of his bottom.  Several times a day.  Sometimes it is a little and sometimes it is a lot.  Whatever it is or size it is, it smells...really, really smells and we have a very high tolerance for smells in our house.
  • Brayden's ileostomy see
    ms to be doing ok, but because of every thing else going on we have to be a bit more specific with measuring the amount of stool coming out of his ileostomy. Nothing like measuring stool.
  • Urine output is fine, actually rather productive.  We have been trying to compensate for things coming out of him everywhere else and giving him more water so that he would not become dehydrated.
  • Vomit, yes there has been vomit.  While there is nothing for him to actually vomit since nothing goes into his stomach, he has been retching and vomiting.  Is that because he is sick, GI troubles, fever/seizures, etc.?
  • A fever. A fever that I thought was gone.  He had a great Sunday and Monday, no sign of fever.  In fact Carter, Luke and I took him to the movies.  He absolutely loved the movie, sat in his wheelchair most of the time and then in my lap.  So proud of him. I don't think he has ever lasted through an entire movie.  Even Carter and Luke know to plan an exit strategy when Brayden acts up too much.  But then on Tuesday the fever started creeping back.  And hit 102.3, of course in the middle of the night.  I was up with him, monitoring the fever, seizures and retching.  It was not pretty.
I have been emailing the doctors updates and lots of pictures of Brayden's diaper goodies.  The doctors have been emailing back and forth...seeming to take a scratching-their-head-method.  Brayden had repeat labs done last Friday, everything seems ok.  Some labs show inflammation but no infection or imbalance.

Whatever is happening, it is going on 3 weeks of it.  One doctor (whom we adore and cannot parent Brayden without her) called in metronidazole (flagyl), to treat an possible infection in the colon.  We shall see if that works, we picked up the med tonight.

And for a little poo humor, Brayden's nurse carried him over to the shower from his bed tonight.  While traveling that short distance, Brayden's bum felt the need to shoot out stool/mucus/who-knows-what.  Left a trail on the floor, rug...and the nurse. Again, not a large amount but the smell, oh the smell.  Now the house smells like bleach.

Pray for our big stinker.  One moment he seems fine and the next he is miserable. 

Wednesday, August 10, 2016

Football Family

A letter that we sent to our local youth football league:

Football season is upon us.  It certainly seems like a great time of reflection on our year and our football experience.  Perhaps this sappy stuff comes as our oldest enters his last year in youth football or as we, the Jenkins family, are finally coming out of one hard year. This is just something we wanted to share.

It is more than just football.

That phrase was certainly something I scoffed at when our family first started with Upper Loudoun Youth Football League.  I showed up to our first pre-season football camp wondering what world we just signed up for. Come on people, it is just football!  My initial reaction to the youth football world was not, well…let’s just say I was not thinking positive thoughts about it.  The intensity, the obsessiveness, the practices that cut our summer short, the crazy parents, the crazy coaches, the crazy parents that thought they were coaches and all of this was just about kids playing football?!

Many years and many seasons in to our youth football experience and I now find all of above quite endearing and even perhaps some things I have come to appreciate.

Football makes our world smaller. It provides community.  It provides bonding not only for the youth playing but the families as well.

We have seen families form life-long friendships over youth football.  Whether that be cheering on the team or jeering at the coaches (and let’s be honest some have really bonded over some sub-par coaching experiences) or just chatting at practices and pre-game.  The siblings look forward to seeing friends on sidelines or in the stands, hours of playing (or getting goodies at the concession stand). We have stood together in some scorching heat, hurricane like rain and winter air that took our breath away.  We have celebrated some amazing wins and agonized over some very tough losses. None the less, real friendships formed in all of those moments.

Even still, it is so much more than what happens on the field, sidelines and in the stands.  What happens off the field is what makes it a community.  We all have walked along side of football families battling cancer or other major illnesses, loss of loved ones, loss of jobs and so much more.  Meals have been made, fundraisers have been organized, Even if you did not know the family, they are a part of our football company and we all support them; many show up for them.

Our family experienced this support first hand last year.  A house fire, that left us in a temporary home (for longer than we would like), without any of our belongings other than what we had on vacation.  Then our youngest son was in and out of the ICU, to many tests, a big surgery and dreaded “talks” with doctors.  Where was our football community?  They came to our doorstep.  Food was delivered, hugs were given, prayers said, laughs came at the right times, help with the boys, rides given and so much more showed up.  We did not even have to ask.  Help came right to us so we could focus on the more important things. They helped keep things as normal as possible for our two boys in football.  The boys had time with teammates, friends, going over to houses, treats given (oh that Slurpee after practice is quite the treat). Our football community showed up as our community.  We will be forever grateful.  And a side note that many of those burley football coaches are actually quite good in the kitchen.

As we were starting to get back in to our house and we finally had a plan for our youngest son’s health (not a plan we liked but some plan is better than no plan when battling medical issues), another tragedy struck the Jenkins family.  The loss of my mother-in-law.  It was a tragic, gut wrenching day.  As the adults in the Jenkins family were trying to sort through the events of the day, our oldest still had a football game to play.  While you might think it was crazy for him to play (and I probably would have said the same thing years ago), we could not think of a better place for him to be.  He was protected there, his heart was protected.  I trembled as I drove him to his pre-game warm-ups that evening. I pulled one of the coaches over, told him in the vaguest way possible, that my husband was not going to coach that night because of a family tragedy.  That moment I saw the tough coach exterior melt away and a Papa Bear came out to protect one of his own (and probably not one that many would expect, given his rather gruff football coach persona), he immediately went in to caring for and being protective over my football players.  My two oldest boys had their football family surround them that night, just by keeping things normal.  The following days were filled with phones calls, emails and texts of love and support.  More hugs given, prayers and tears shed.  You see, my mother-in-law rarely missed the boys’ football games, she was in the football community as well.  Countless people from our football community came to the offer their condolences, more than we could have ever fathomed.  They came to support our family.

Football, it is so much more than just football.  Know that ULYFL has the platform to have influence and impact on those in the football family. Football is a community. 

Football is an honest game. It's true to life. It's a game about sharing. Football is a team game. So is life.” – Joe Namath

And in case you were wondering…

I have become one of those crazy parents. Screaming from the sidelines (yes from the sidelines and not the bleachers, I can’t handle sitting during the games) to my boys “You better hit someone!”

Carrie Jenkins
For the Jenkins Family

Thursday, August 4, 2016

Poop in the Diaper

Brayden’s summer had been rather uneventful.  He did attend summer school, Tues-Thurs for the mornings.  Otherwise been at home and a couple of times in the pool.  I try our best to ignore the doctors over the summer.
Brayden had a different plan.  Over the past week, Brayden had stool in his diaper.  Yes, out-of-his-bum-poop.  Poop should only be coming out of his ileostomy not his bum.
Brayden had his ileostomy surgery in Nov, the plan at the time was to remove his colon.  However, due to his instability at the time, the surgeon thought that the ileostomy and colon removal would just be too much.  So Brayden only had the ileostomy done.  We knew that Brayden’s colon still had stool in it (they were not able to flush it all out), we were told to expect the stool to come out at some point.  But stool coming out of his bum 8 months later is not so good.  Three times in the past week, Brayden had a very full diaper with actual poop, which has come along with low grade fever and the fever causes increase in seizures and gagging.
Talking with his GI doctor at Children’s (and his pediatrician), they wanted him at Children’s for x-rays and labs.  So we packed up and headed in late Monday afternoon.  Brayden, his Ms. Stephie and I spent afternoon and evening on the lovely 2nd floor at Children’s, waiting for his turn for labs and x-rays (really waiting for them to find the orders for them).  Then we waited for the results.  The doctors wanted us to wait at the hospital in case more testing was needed or the possibility he would need to be admitted.

Surprisingly, the x-rays and labs came back “normal for Brayden”.  Which is great news but the doctors are NOT at all comfortable with the stool and the amount of stool that we have seen (yes, I sent them pictures).  We brought Brayden home on Monday night around 9:30 (he screamed from the moment we left the house until we got home and finally passed out asleep in his bed).  The GI team wants to discuss things further, amongst themselves, but they don’t really seem to have any answers.
Brayden will remain at home unless we see trouble with his ileostomy or an increase in the fever. 
Something is not quite right with him, praying that this is just a little blip/oddity that has always been a part of Brayden’s medical story.