Tuesday, April 18, 2017

Georgetown Cupcake

Georgetown Cupcake donated 7 dozen cupcakes for Brayden's birthday. How did this happen?!

It all started in 2008, we were still trying to understand Brayden's ever-changing needs. We discovered a little cupcake shop (Georgetown Cupcake's original place). Stopping for cupcakes became a part of our DC routine. A day at the hospital...well that certainly deserves a cupcake. Their little pink box somehow added a bit of happiness to whatever happened that day. When Carter and L...uke were little, they had to come along to many hospital and doctor appointments, so why not bribe them with cupcakes?! Then the cupcakes became part of our celebrations for school, birthdays, etc. Well...we may have talked about our cupcake stops quite often so friends (you know who you are) brought us cupcakes, when they happened to be downtown. Our pediatrician even got in on the action, texting us about the secret cupcake of the day when we were downtown (FYI, if you know the secret cupcake, ask for it and it is free). 

I knew that if we made it to Brayden's 10th birthday, Georgetown Cupcakes had to be a part of it. Brayden does not eat but he does like the icing. Georgetown Cupcake is just part of our trekking back and forth to DC for many years now. I sent Georgetown Cupcake a message about Brayden's birthday, they replied immediately and offered to comp the order. Their kindness and generosity is all the more reason to love it. I cannot thank them enough for being a part of Brayden's big birthday celebration!
#georgetowncupcake #dccupcakes

Monday, April 17, 2017

10 years

10 years ago, Brayden was born. 10 years ago today, we were still delightfully oblivious to any of Brayden's health problems. The top picture has always been hanging in our kitchen, the sweetness and frankly a lot of innocence, helps me remember that in all of this there is joy, simple joy. It was not until a couple of days later that we started to discover his brain was not formed properly. But God knew and thankfully all of Brayden's troubles have been slowly rolled out ...over the years because there is just no way we could have handled them all at once. Brayden's from the beginning, such truth:
Psalm 139: 13-18
"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you…Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."

Today we celebrate his 10 years but also that we made it 10 years! I would never let my mind wander, to think about him getting older. We have never known a diagnosis or how much time we have with him. Whoa, we made it 10 years!
Oh how much we love him!

In honor of his birthday, donate $10 for his 10 years to Jill's House.
comment: In honor of Brayden's 10th birthday.
for more info on Jill's House - jillshouse.org

Friday, March 31, 2017

They Change You

Having children changes you.  Having a special needs child changes you, down to every fiber of your being.   We have two older boys, Carter and Luke.  Brayden is our youngest.  Yes having Carter and Luke changed us but then came Brayden and well...
What does having a special needs, medically complex child do to you?  You have a child that is completely dependent on you…literally you are responsible for keeping that child alive; whatever their version of healthy may be, comfortable, feeling loved, etc. 

They change:
  • How you see life and death
  • How you handle life, in the little and big things
  • How you participate in life and activities (or don’t, which happens more often than not)
  • How you parent that child
  • How you parent your other children
  • How you love – a love that you never knew existed, and the word love just does not seem to do it justice
  • How you hurt – and boy it can hurt
  • How you see the value and “quality” of life
  • Your family structure
  • Your marriage
  • Your identity
  • Your needs
  • Your emotions
  • Your faith
  • How you have friendships – you just don’t have time or energy for anything but quality friendships
  • Your lifestyle
  • Your finances – how you spend money on your home, vehicles, savings, insurance, medical items, etc.
  • Your time
  • Your priorities and how you make decisions
  • Your self-care and caring for others
  • Your coping skills
  • Sleep
  • Endurance – I call it the sleep over effect.  During the sleep-over (aka medical crisis) you are on and ready to go.  Once the passes, whether it be hours or days or weeks, then you crash.  Like a child that had a sleep over, totally up all night but crashes once home and sleepover is done.
  • Your senses – I can hear the pump going off from a mile away.  Sniff out a feeding pump spill or poo situation from another room.
  • Your gut – sometimes you just know something is not quite right, sometimes you know something will be alright, even to the contrary (or doctors) and you have to trust that God-given “gut” feeling
  • Your vacations or lack there of
  • Your time management or ability to makes plans (making plans can just be laughable)
  • Your dependence on others (which some of us just don’t like to do)
  • Your need for help
  • Your need for community and support because isolation is very real and easy to slip in to
  • Your ever expanding medical knowledge and comfort level in all medical situations. And uncanny ability to recall any given medical fact about your child but cannot remember what you ate the day before
  • Your circle, which mostly involves doctors, nurses, case managers, insurance companies, equipment companies, special-ed and pharmacists.  Because they are who you interact with often.
  • Realizing you have very little control and thank goodness God's got this because it is too much for us to handle.
  • Your flexibility in situations and absolute stand-my-ground when fighting for your child
  • Your voice. You learn to speak often and when needed, especially when you have a child that cannot speak for themselves.
  • Hopes, dreams, goals, expectations that you had for the child and perhaps your family.  You adjust.
  • Milestones - You learn to grieve certain things but celebrate other things, new milestones
  • Embracing different hopes, joys and celebrations
And all that, changes you for the better.  It has changed you in ways that you did not even know possible or expected. 

Everything about your life, and your family, goes through filter of caring for that child.  Your child changes everything.

Friday, March 24, 2017

Where are we?

Sorry all, Brayden is doing fine.  I just needed a break from blogging but will be back to it very soon.

You can follow us on facebook for our day-to-day bits.

Friday, September 16, 2016

Don't call it a comeback

He's been here for years, Rockin it with his peers... Yes a little ode to LL Cool J.
Yes we feel like we have almost been knocked out this past year (sorry I just can't let the song go. and to make you feel old; that song came out in 1991, released on a cassette).

We did feel like it was blow after blow for Brayden's health.  And it seems like each year his health takes a hit; but he keeps on going.  The doctor's give us those absolutely awful talks about the state of his health, and yes, I agree that on paper Brayden seems quite bad.  And the talks that started this time last year took a very serious tone.

However, Brayden's keeps being himself.  Even his last lab work looked good.  Not just "good for Brayden" which is a phrase that is often used, but his labs actually looked good.  Labs were better than I have seen in a long time.  The ileostomy and his electrolytes seem to be managed.  We have been dealing less with the poop out of his bum; a round a meds seemed to have helped.

Now that Brayden's ileostomy and bum situation seems under control (and I use that term loosely), we can concentrate on his bone health, comfort, etc.  His body is tight, time of Botox.  His spine is curving too much.  And we are trying to catch up with his bone infusions.

Brayden's temperament and personality always seem to show that he is a rather grouchy old man, does not like change, does not like to do anything he does not want to do and he will let you know.
Look at his face in the video, he is ready to knock someone out.  School music was not what he wanted at that moment.

He still loves to be outside and with his family, especially his brothers and daddy (minus Luke's trumpet solos).  And his puppy and froggy.  Loving country music and movies with music.  Brayden is going to the same school he has attended since preschool.  We are trying to get him there everyday but, well, we try our best.

God has given Brayden a big personality and given us more and more time to discover it.  We are so thankful that Brayden has been stable or dare I say, healthy for being Brayden.  Of course, he keeps us on our toes every day but it's not gonna knock this mama out.  Don't call it a comeback, it's been this way for years.  And we are thankful for each one.

Saturday, September 3, 2016

Start of School

This may have been the smoothest start to the school year, in many years.  A bus came, actually on time, drove him to the correct school.  I did not have to drive him, I did not follow the bus (although I did hang out in Leesburg for the day).  Brayden was actually healthy enough to go to school.
Brayden attended school Mon-Thurs.  Same school, same room, same teacher and aids.  He decided to put his game face on for school...the "don't talk to me" face.

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.

Friday, April 8, 2016

It is a Fierce Love

"having or displaying an intense or ferocious aggressiveness";
"showing a heartfelt and powerful intensity"

"unselfish loyal and benevolent concern for the good of another"

I was recently asked to describe what is means to be a mom to a special needs child, a child with significant medical needs.  I have the privilege of being one and knowing others.  We are all so different and our children's needs are different.  Pausing to think about the one thing we have in common; without a doubt it is a fierce love for our children.

A fierce love that powers us through so much; it has changed the fabric of our being. And we love our child with every fabric of our being. 

It is a love that is so aggressive and ferocious that gets right in.  A love comes barging in when we first hear a diagnosis and/or a grim prognosis.  We hear that we have a child that will struggle, daily, just to be in their own body.  Oh that love digs deep down in. We learn that every day will be a battle.  Over time, we realize that the battle is still present but it really becomes a privilege.  This fierce love sinks it's teeth in deeper and deeper each day.

This fierce love is more powerful than anything I could have imagined. I had no idea it would come with such extreme joy and grief, all because of your child. Your child. We have been knocked down to some very low lows but we get right back up, for our child.

We have gone to battle for our child.  Making medical decisions that we never thought would happen.  Understanding those medical decisions, sometimes more than the doctors. But we still have to find a balance of how much medical intervention and their quality of life.  One of our early decision came when with addressing seizures, how many seizures in a day can he handle or how snowed with medication will he be, are the seizures bothering him more than the medication, etc.? Now it has become, how many more surgeries, hospital stays, etc.?  We battle with ourselves to make those decisions.  Sometimes we battle with God, pleading for our child's comfort, asking why, when is enough, enough?   That fierce love comes with some fierce responsibility and questions.

Our definition of happiness and being content has changed.  It changes the moment your child makes progress or, at least, is stable. You have new standards. It changes when they smile and when they need you.  They need you for their survival, for their well being.  As a result your parenting becomes the most unselfish, loyal and benevolent concern for another that you will ever know.  One you did not even know you were capable of having.

Over Easter weekend Brayden was not happy; fussy about everything.  I just could not get him to settle down. We thought he might be tired or just all of the chaos of people around.  I decided to put him to bed early. I was rolling him over in bed. He rolled his head right in to my shoulder and he stopped the crying. I scooped him up. He sat in my lap. I know I heard him give an audible sigh of relief. All he needed was his momma to hold him, to quiet his body, to provide comfort and finally peace.  And I stopped everything else that night, just to hold him...for a few hours we sat there. His world need to be stilled so I had to still mine.

This fierce love could be defined as a momma bear.  We pull out the momma bear with insurance companies, schools, doctors, equipment companies.  Fighting, protecting and providing for our child. But that fierce love come roaring up faster when someone has harsh words about our child. I will not share any words that have come our way because I do not want to even acknowledge them.  But trust when I say that having a special needs child comes with all kinds of comments, criticism, unwelcomed "advice", etc.  This fierce love had to make us stronger.

The powerful intensity of this love is almost terrifying. This child has changed us so much, changed our world, that we cannot fathom a world with out them in it.  Their care, happiness and comfort consumes every part of our day and decision making.

We have had sleepless nights being up with our child at home or in the hospital.  Or we even have sleepless nights worrying, thinking about them. Even our dreams (or nightmares) include them.  We live at a constant level of stress.  But to be without that stress would mean that we would be without them. Some have already lost their child, others are battling major medical issues, others are grateful to be in a "healthy" phase and we have learned to live day by day or sometimes even just moment to moment.  This fierce love has taught us not to take one day or even sleepless night for granted.

I am forever grateful for this fierce love.


As I said, this fierce love has changed that fabric of our being. This list is what I pray becomes more and more of my character.

From Focus on the Family: Characteristics of a beautifully fierce woman
  • She's filled with gratitude for God's good gifts. Her heart is ruled by the peace of contentment.
  • She's passionate about things that matter rather than living for the trivial.
  • She's willing to battle for a worthy cause rather than shrinking in defeat.
  • She protects and defends the helpless rather than using her strength to bully others. She is known as a sincere encourager.
  • She's honest but kind.
  • She walks in confidence and humility that flow from her recognition of Christ's work of grace in her life.
  • She has the power to influence and inspire because she lives under the Spirit's control.
  • Her identity and value are rooted in her relationship with Christ.

Wednesday, March 9, 2016


those naïve college days
I cannot tell you how many times I have used the word broken over the past nine months.  I have never seen my husband so broken, in so many ways, throughout all of these circumstances. Broken in ways that has left me helpless as his wife.  Then I realize that I have been broken too, in different ways.  And of course, Jeremy wondering what in the world he could do to help me.   Brokenness deep, deep in our being. How can we get it together when everything around is breaking down?  By God’s grace, our marriage as gotten stronger.

I was reading an article recently about brokenness in marriage.  The statistics for marriages with special needs children are not on the positive side…then toss in a house fire, lost loved one, change in job, scary hospital stays and we have to actually parent our children throughout it too.

This song recently popped up in a feed and I listened to it again.  I think it speaks volumes about marriage.  We are both broken and the whole idea about making each other complete...that is rubbish. We are all so broken, how could we really complete each other? Isn't that an incredibly unrealistic expectation and unfair to put that on our spouse?

Maybe you and I were never meant to be complete
Could we just be broken together

If you can bring your shattered dreams and I'll bring mine
Could healing still be spoken and save us
The only way we'll last forever is broken together

"Two people are better off than one, for they can help each other succeed.
If one person falls, the other can reach out and help. But someone who falls alone is in real trouble.
Likewise, two people lying close together can keep each other warm. But how can one be warm alone?
A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken." – NLT Ecclesiastes 4:9-12

That triple-braided cord - who is the third?  Christ.

Tuesday, March 8, 2016

It's a Jenkins Thing

A family business. We try to get all of the family involved, no excuses. - Jenkins Enterprises

Sunday, March 6, 2016

a Letter to our Family

Jeremy and I needed time to talk, process things and talk with Brayden's doctors.  Then we emailed the family. Now we post the letter we sent to our family:

A little update on the big guy.

First off, Brayden had his leg cast removed yesterday.  His femur is still healing but at this point they felt as though he could be out of the cast.  And Brayden is thrilled to have his leg back.  They cut the cast open and he immediately plopped his hand on his leg and started kicking.

Secondly, Brayden had labs done yesterday.  Again, it was to check his electrolytes.  Thankfully all of his numbers seem to be in a good range.  He will continue to be monitored every couple of weeks, to make sure we do not see a gradual change or even a dramatic change in his numbers.  Why are electrolytes important?  Electrolytes are the smallest of chemicals that are important for the cells in the body to function and allow the body to work.

Which leads me to be the deeper stuff.  Jeremy and I needed some time to process a lot of information that was given to us during Brayden's last hospital stay.  And I talked with Brayden's pediatrician yesterday for quite a while.  His pediatrician has been a close confidant throughout Brayden's life.  She helps us make sense of the specialists information.
Brayden's electrolyte game is crucial to his care and life.  We need to keep his electrolytes balanced and in a normal range.  The doctors help us with the correct food/water/supplements that he needs and monitor how his body processes it all.  We are just now starting to understand (or not understand, some days) Brayden's troubles with his electrolytes.  Brayden's GI system has seen quite a demise over his lifetime.  First a g-tube, to a g-j tube, then g-tube and a j-tube, malabsorption, motility issues, ileostomy, etc.  We have had an all access pass to Brayden's GI system.  The current problem is his electrolytes and his body trying to properly use what we are giving him.  If we are not able to keep his electrolytes in a good place, Brayden would more than likely be put on TPN (IV nutrition) instead of being tube fed.  To be on TPN, and there is no way to softly land this info, would be the beginning of the end.  Brayden's body would not last long on TPN.  Naïve or not, Jeremy and I are still under the impression that we still have time to understand his electrolytes, especially since they are monitoring him closely and he could be fine for quite a while.  But if not, then we face some tough decisions.

We all know Brayden's brain is very abnormal, every part of his brain has some sort of abnormality.  As he has grown, his brain continues to compensate and work at the best of its ability.  Brayden is fully in puberty, which can do some pretty wacky things to the brain (just ask any parent of a teenager).  Brayden's brain, with puberty, can be sending some wacky and potentially not so good signals...puberty may not be the best thing for his health.  They cannot tell us exactly what it may do but to expect something that may be small or big. 

Brayden's body is not functioning properly on an electrical level (his brain) and now on the chemical level (electrolytes).  During the last few days at the hospital, doctors from the Care and Palliative team came to talk with us.  Lovely doctors but trust me when I say that they are not really the doctors you want to see.  And with each hospital stay from here on out, they will be popping in.  They wanted us to understand the path that Brayden's body has been on and where seems to be heading (which could be years from now or much sooner).  They discussed with Jeremy and I separately and also together (I was conferenced in from home).  The doctors encouraged us to think about how much we were willing to do for/to Brayden; think about when the bad days start out weighing the good days; when has his body had just too much; what plan of care we would prefer (if we were faced with a choice).
We are not sending this email out to sound the alarms bells but to ask for deep prayer.  With each blood test from here on out, we will be holding out breath, waiting for good results.  The core group of Brayden's doctors have been with Brayden since the beginning of his life, I trust them and will continue to look to them for understanding and guidance as we care for Brayden.  But his body needs to be covered with prayer.  The info sounds scary and quite overwhelming but as I sit here typing Brayden is happy shouting at the Mickey Mouse show, kicking his legs and looking quite comfortable.  He keeps us on our toes and has already exceeded most doctors' expectations for his life.


Saturday, February 27, 2016

Done with Hospital and Headed Home

Brayden and his Papa Warren has a slumber party in hospital room 711 last night.  And Papa brought him a new turtle friend.  I dashed home (for about 10 hours to crash) and came back to wait on rounds and hopefully plans to discharge.
The last three labs (done every 12 hours) for his electrolytes looked good and that means discharge.

Brayden will need to see a doctor next week and then in a couple weeks and probably more regularly after that to check his labs.  But for now, we are headed home and this kid needs a shower.

Friday, February 26, 2016

Test Results and Labs

Many tests were done.  Not a lot of results, meaning most things did not give some great direction on the best treatment for Brayden.
The troubles:
  • Electrolytes
  • Retching followed with severe apnea when he is awake (turning blue all over for a couple of minutes)
  • Very low body temperature (technically hypothermic)
  • Heart which is troubled by the potassium problems (and thankfully no heart problems)
  • Running out of places to draw blood (his arms look like an 80s PSA for "say no to drugs")
  • Ins and outs - what do we put in him? what needs to come out of him? and what happens in between?

As Brayden's electrolytes have normalized most of the trouble listed above and have faded away.  All a result of the electrolytes?  Quite possibly, but all seem find that things look better.
Magic in a packet?  Brayden has been completely off IV fluids and put completely on his same formula and fluids that we have been doing for a few months...only one small change that may be big results.  Adding this ORS packet to his food.  High hopes that adding this will help his electrolytes.
Again, he will have labs and we wait to see if all looks good.  And he is now curling up his arms in defense of drawing more labs.

Thursday, February 25, 2016

Hospital Down Time

Many tests have been done.  Many doctors have discussed, reviewed and discussed more.  Many labs have been done.  But that still leaves us with a lot of down time.

In between the down time:
  • Brayden finished his 24 hr EEG.  Nothing remarkable on the EEG.  But lets be honest, Brayden's brain is so abnormal, we are never really convinced an EEG will tell us much.  The neurology team is fine with Brayden's current seizure control and medications.
  • A new doctor to the mix - Complex Care doctor has been just that...looking at the complexity of Brayden's medical history.  This doctor seems like the puzzle master, looking way back in Brayden's file all the way to things currently happening.  Looking for clues, trends, abnormalities.  Jeremy spoke with him for quite some time and then they conferenced me in the discussion.  The discussion with this doctor deserve a blog post all to its own but I don't have the mental capacity for that right now.
  • Abdominal x-rays done.  Brayden had some odd abdominal x-rays his past few stays...we thought it was just a tooth gone rogue but it seems to have been some other type of inconsequential calcification.
  • EKG done, since potassium troubles can have direct troubles for the heart.  Thankfully Brayden's heart seems chugging along just fine.
  • Labs, labs and labs.  Still checking those electrolytes and now the liver.  The electrolytes are all trending in the right direction.  Brayden's liver numbers were a bit off but we are not sure what that means yet.
  • GI and nutrition are always part of the plan.  Brayden's ileostomy output has increased, in a good way because of the IV fluids and extra electrolytes.  As of this evening Brayden has been taken off IV fluids and electrolytes.  They have put him completely on j-tube feedings of his regular formula but added something called Oral Replacement Solution (basically a supped up version of Pedialyte).  Give this to him over night and check his labs in the morning.  The teams of doctors want to give him time on a home regiment to see how he would respond.
Speaking of responding.  Brayden has been responding better than we have seen him in many months.  He has spent the past couple of days with more awake time than he has had in months.  He has been alert and very responsive.  Below is video of him happy with a movie, then when he is not happy with a song in the movie.  Oh how I love to hear his voice.  Brayden has "talked" more in two days than we have heard in a very long time.  He is feeling good when the right stuff is going in and coming out of him.

In the actual down time, we went on a search for one of his beloved animals.  I brought one with us to the hospital.  But when I arrived this morning, it was gone.  I questioned Jeremy and he had no clue. I may have gone through the trash and dirty linens buckets to look for it.  I needed to find this stuffed animal, it is by far Brayden's favorite. I asked just about anyone who came in the room, giving a description like it was a lost person report.  A nursing student realized she had seen one similar in description...in a basket with the EEG machine.  The EEG machine that was removed for the room yesterday morning.  Sweet puppy went for an adventure in the hospital, taken to many places in the basket of the EEG equipment.  That EEG machine was tracked down and he has been returned. These cubby hands are quite happy to hold on to him.

Jeremy headed home to be with Carter and Luke.  Brayden and I are hanging out.  What are we doing?  Brayden has enjoyed the movies Aladdin, Happy Feet, Cars and Lion King.  He is not quite a fan of Tangled.  I have enjoyed watching Comedians in Cars Getting Coffee and Carpool Karaoke (I cannot handle anything deep so we keep it light at the hospital).

As for when Brayden could come home?  Maybe tomorrow night...at least that is what they said a couple of days ago and haven't really said that since, but it still counts because they said it.  A lot will depend on the labs in the morning.

Wednesday, February 24, 2016

Lots of Questions in the Hospital

We have seen and talked to so many people in the past 24 hours.  Brayden's electrolytes were going down and getting in to the danger zone (some numbers were already there, thus being put in the hospital).  His electrolyte numbers are working their way in to the correct place.

I thought, naively, that a lot of Brayden's problems over the past year with his electrolytes, motility, weight, etc. would be resolved as a result of the ileostomy surgery.  Yes, Brayden's stool is coming out the ileostomy so we do have poop.  But what is going on with everything else?

The busy hospital waiting game:

Hospitalist - the guy leading the team and oh so many doctors.  Going over and over Brayden's past medical history, specifically Brayden's last few hospital stays and Brayden's current troubles.  The hospitalist and the team are trying to put together the seemingly random pieces of Brayden's puzzle.

GI Team - This electrolyte game seems to be all about Brayden's ins and outs.  The food, supplements, water, etc. going in to him.  And the ileostomy output, as well as his gastric drain output.  Every bit of it counted.  Brayden's food and water amounts do not seem to be working.  Does he need more calories? Higher concentration of food?  Not tolerating water?  Does he need supplements?  Brayden's ileostomy does not have much output but does more need to come out?  What amount should be coming out? 
Neurology Team - related to Brayden's electrolyte problems or not, we have noticed for about 2 weeks (at home and at the hospital), Brayden has these retching episodes.  Yes he retches all the time, which are always quite dramatic.  But the past two weeks his retching is followed with apnea episodes.  He finishes retching and then shortly after he turns blue, he turn blues all over, not just his lips.  His oxygen dips way down.  It lasts about 60 seconds.  And it happens 2-6 times a day.  The neurology team wants to see if it may be seizure related so Brayden is now hooked up to an EEG for 24 hours.  Videoed and we have to click and document the retching/apnea episodes.  Are these episodes a result of electrolyte problems? Or something else?

Lab Tech - come a couple of times a day to draw labs.  Which might be the worst part of the hospital, Brayden is such a hard stick and running out of places to get a good blood draw.  Everyone is constantly watching his electrolyte numbers.  His potassium, sodium, chloride and bicarb are the problems.  Numbers sort of heading the right direction.

Respiratory - Brayden's BiPAP and his apnea troubles.  Trying to get any sort of breathing mask on him with the EEG set up is proving to be quite a challenge.

Med Students - Yes Children's is a teaching hospital.  We found out that, currently, Brayden is the most involved child on the floor.  Which provides lots of discussion, teaching, learning during rounds and room visits, especially since Brayden does not have a diagnosis and so many things going on.  I do say, and will continue to say, that I like being in a teaching hospital.  I appreciate the thorough discussions.  Being a part of the rounds and discussions help me learn so much and understand the doctors' thought process.

The plan thus far, Brayden has been on IV fluids (that include sodium and potassium supplements) and his normal food via j-tube, trying to normalize his electrolytes.  Then Brayden should start his food via j-tube with some supplements in the food(that we are not quite sure what is in the mixture yet) and taken off the IV fluids.  He will be monitored while on this food mixture to see how his body responds.  Clearly his electrolyte troubles are not an acute problem.  Even if his numbers get to the correct place, will they stay there?  How can we keep them in the correct range?

Brayden will be in the hospital at least till Friday night or the weekend.  He is being monitored in every way.  Brayden does seem like he is feeling better.  As of yesterday afternoon, he has had more time being awake.  He is vocalizing more, expressing his dislikes and some happy noises.

Jeremy brought Carter and Luke down for a visit.  Then I headed home so Jeremy stayed with Brayden at the hospital.

Tuesday, February 23, 2016

Those Electrolytes

Brayden has been admitted for his electrolyte problems.  Friday he had labs and they did not look good.  Monday (yesterday), the labs looked a worse.  It was decided Brayden needed to head to Children's hospital.

We finally got to the hospital around 7:30 p.m. last night.  The ER needed to assess him to determine if he needed to be admitted or just receive fluids...well, it didn't take long because the labs the ER did and with Brayden's medical history, they determined he needed to be admitted.  So we waited in the ER and finally got a room around 2:30 a.m.

Several different doctors have come by since being admitted, not sure what specialty should take the lead.

Morning rounds and morning labs have been done.  Brayden's labs this morning did not show much improvement and some looked worse, despite the IV fluids given.  The biggest problems seem to be his Sodium, Potassium and BiCarb.  From what I could assess during the team rounds, they are assuming that (in layman's terms) Brayden's body has not recalibrated since the ileostomy surgery, so he ins (food, water, etc.) are not matching up with his outs (stool in his ostomy and his stomach drain).  As to why this is happening and how to correct it remains the big question.  The Hospitalist and team is consulting GI and Neuro as well.

He is being given IV fluids and supplements via IV, more labs done this evening.  Given his food via his j-tube.  And it is all just a waiting game.  This is not an acute problem, seemingly ongoing for Brayden so they do not want to discharge him without some longer term plan to keep his electrolytes in the right place.

Monday, February 8, 2016

You know You are a Tubie Mom

Feeding Tube Awareness Week

Yes feeding tubes seem so serious, scary and can sound like the beginning of the end.  However, I like to take the approach that we can find humor in just about anything, even feeding tubes.

Thus, you know you are a tubie mom when:
  • You no longer panic that there is an actual hole right in to your child's body.
  • Hearing the sound of any beeping, you immediately look at the feeding pump for an error message (for me it is trucks backing up and our dishwasher beep). 
  • Hear a beep and you still look for the pump even when the feeding pump is not with you.
  • You have loose syringes in purses, pockets, cars compartments, etc. the way most people find loose change or gum.  You cannot find a pen but you sure can find a syringe.
  • A perfectly sized syringe makes you happy.
  • Delivery of medical supplies is a little exciting.
  • Your child's closet is less about clothes and more about medical supplies.
  • Medical supply companies can make or break your day.
  • Any measurement you now think in terms of mls or ccs, even when cooking.
  • You no longer notice tubie breath.
  • You are grateful for the feeding pump until it malfunctions in a way you cannot fix.  Then you want to toss it out the window, run it over, smash it with a hammer and more.  And it always malfunctions in the middle of the night.
  • You know what 16 French, 1 cm means.
  • You consider the Gastroenterologist a close family friend.
  • Mickey - no longer means Mickey Mouse but the Mic-Key button.
  • Extensions, Balloons and Buttons have a completely different meaning to you than the rest of the population.
  • Your other children have participated in the tube changes...perhaps in the parking lots during their basketball tournament?
  • Your other children know how to operate the feeding tube better than they do the washing machine.
  • You know that smell.  The smell of formula.  Formula that has gone rogue...a leak, a spill, the tube came apart. 
  • You can change a your child's button just a smoothly as you would change your earrings.
  • Still wondering how poop can change every day when you child gets the same food, same amount, same time, every day.
  • Your blizzard supplies do not just include milk and eggs but: Charged Feeding Pump, Bags, Formula, Water, Medications, Syringes, Extensions, Extra Buttons, etc.  Remember to charge the feeding pump (and back up pump) in case of power outage.
  • Packing for any trip, day trip or week trip, is a process.
  • You have replacement kits every where, just in case your child requires a change.
  • You immediately identify with other tubie parents.
All to say that you are actually grateful your child has a feeding tube because it does improve their quality of life.  It gives them nutrition, ease of giving medications and it gives this mom some peace of mind.

Monday, November 23, 2015

Adjusting to Home

Brayden was discharged.  And I felt like it was more about discharging me.  Pages and pages of instructions for me, which I assured them we could handle at home so that Brayden could go home.

Part of the discharge plan was the changing of the ileostomy bag.  The entire contraption is changed twice a week.  Emptied several times a day.  The emptying part is interesting, at first we thought it did not smell much...then we realized that he was only on IV fluids.  Oh that smell changed after he started with the food.  A smell like poop but much more than that, like this where poop has come to die.  It is quite the smell.  Of course they give us anecdotal advice to minimize the smell.  The best/oddest advice?  Put some mint tic-tacs in the bag, it helps with the smell.  I will let you know if the tic-tac actually works.

Jeremy and I had full ostomy training.  And that was intense.  Not intense because of his ostomy, intense because of the wound care nurse that did the training.  She did not mess around and found no humor in our poop humor (I mean poop is shooting out of my child's side and that ileostomy farts, it actually makes a little fart noise, we have to find some humor in that).  I am glad she was intense because changing the contraption is a process.  My first go at it and it was about an hour...I may have done a part incorrectly and told to redo it. 

Finally I had it on.  Brayden handled it just fine.  As everyone kept reminding me, the intestines have no nerve-endings so it is not the problem for pain.  Protecting the skin around the stoma is where trouble can arise.
After two trainings, we given supplies for a couple of weeks until the monthly supplies start arriving.  And wow it is a list of things:  ostomy attachment, ostomy bags, tape remover, skin cleansers, gauze, more gauze, powder, paste, some smooshy stuff (don't know the name yet), glue, tape, etc.  And I learned from the training that all needs to be set up before you start changing.
I looked like to looted the supply closet when we left, bags and bags of supplies.  Our hospital swag bag, which I actually enjoy.  It is our life's version of a goodie bag.

Once home, Brayden settled in quite well.  Except the first night.  He was upset.  He did not seem to be in pain just wanted Jeremy or I with him at all times.  And not across the room, but right beside him.  After all of the exhaustion I finally crawled in bed with him till sometime after midnight. 

The next day, he just wanted to sleep and not be bothered.  He made it abundantly clear how he was feeling.
I am learning to adjust.  I had full intentions of calling a friend over and their child's nurse to help me with my first time changing the ostomy contraption at home.  Well, it did not work out that way.  After rolling Brayden over one evening, we noticed a bit of poop leakage.  The seal broke and we needed to change the entire thing.  A bit of panic and a shrill of shouting for Jeremy, might have happened.  I was not mentally prepared for it yet.  It honestly feels like an operation.  I frantically tried to get things all set up and working towards changing it.  I am not quite fast enough yet (time is not on your side because it leaks/shoots liquid poop), about 45 minutes this time.

Brayden has many follow up appointments.  I even have to take pictures and send them in for review.  One appointment we are looking forward to is the surgeon.  Brayden cannot have a bath or shower until the surgeons says a looks good.  A bed bath just doesn't do the job.  Poor guy, his hair is taken on a life of its own.

Wednesday, November 18, 2015

The Waiting Game

Apparently the Waiting Game is the game in which we must be participatory.

The last couple of days have just been filled with waiting.
Waiting for rounds
Waiting for labs
Waiting for ostomy output
Waiting for a wet diaper
Waiting for increase in feeds and water

Waiting and watching.  Brayden's electrolytes continue to be the problem.  He has been looking good and acting much more like himself.  No problem making himself comfortable in bed.
In the down time of waiting, physical therapy came by as well as the doctors from Physical Medicine and Rehab.  We talked about positioning and equipment.

I may have decided Brayden need a bit more than just a wipe down, so I gave him a good bed bath, soap filled shower cap and all.  He was thrilled.
Jeremy and I also got a little training in taking care of the ileostomy.  Emptying it, cleaning, removing, placing, etc.  Oh it is nothing but fun...to see part of your child's organ hanging out.
Jeremy and I have been swapping back and forth for hospital time and home time.

I was at the hospital last night and had a great visit with the fabulous Aunt Tammy, who happened to be in town for a brief business trip.

Sunday, November 15, 2015

Out of the PICU

Brayden has been moved to the general floor.  He is doing pretty well.  It is nice to be out of the shared PICU room.  The private room might be the best hospital view we have ever had; a panoramic view that includes the Capitol, Washington Monument and more.
Any weekend at the hospital is rather quiet, not much going on which means it just feels like a big waiting game.  Even the busiest hallway in the hospital is vacant.

Of course Brayden still likes to keep everyone on their toes so he still struggled with seizures, almost 48 hours and still not breaking out of the seizures.  Pushing in to day 3 of seizures and he finally seemed done with the constant in and out of seizures and now we are only seeing his typical daily seizures.

To help with the seizures and test out his function of his GI system's ability to absorb, they gave some of his medications through his j-tube yesterday.

With the attempts to use his j-tube, it started up the activity for his ileostomy.  A bit too much "dumping" out yesterday and his electrolytes started to take a hit.  They ordered more blood work and an EKG.  They pumped him with some additional things to help with his electrolytes.  That helped him perk up and seem much more like himself.  Which was great since Jeremy brought Carter and Luke down for a visit.  And we had a family dinner with hospital cafeteria food (not the best choice on the weekend, slim pickins).
Brayden (and Jeremy) slept pretty well last night.  The doctors put orders in for Brayden to start his j-tube feedings.  Starting at 5mls/hour and slowly increasing.

Today, Brayden has handled the j-tube feedings relatively well.  There was some "dumping" in to his ileostomy so they needed to replace those fluids with a big bolus of IV fluids.  The concern with dumping is losing to much fluid and being dehydrated (which causes problems for electrolytes, high heart rate, etc.), much like having severe diarrhea.

His ileostomy bag came loose and they needed to put a new one on.  Jeremy was able to see the process of the change and making it work for Brayden.  It is tedious and specific but we will get the hang of it.

Overall, Brayden is doing pretty well,  Today he seemed much more comfortable and showing signs of his personality.  And snuggling with his new little friend, puppy.  Oh how I love those chubby hands.