the Brothers

This blog is all about Brayden.  But what about his older brothers, Carter and Luke? 

How is it to be Carter and Luke?

My heart has been heavy for them lately.  In their short lives, they have seen and heard, had front row seats to very serious and traumatic events.

As Brayden’s big brothers, they had to quickly learn that life is not about them.  They have seen their brother in very dire situations, ICU, hospitals, tests, etc. 

They know how to operate the feeding pump, pulse ox, and Brayden’s other machines. They know how to handle Brayden’s seizures, poor breathing, projectile vomit (even with blood), hold gauze over open holes in Brayden’s body when tube comes out…all have become somewhat of a disturbing norm to them but nonetheless it can add chaos to a day.

Their life always has a level in instability.  Many years they have watched their parents rush off to the hospital or spend days with doctors, not quite knowing where they would end up, whether at a neighbors or in the ambulance with their brother.  Not knowing when anyone would be home and learning to be self sufficient.

Even when not rushing to hospital, there is always a chance for instability within the house.  A simple example, I was loading Brayden so I could take the boys to practice.  But as I was loading, Brayden’s feeding tube popped out…which delays leaving and possibly making them late for practice.  Many nights they cannot be loud, have friends over, etc. because Brayden needs to a quiet environment.  When Brayden does come out with us, we always have an exit plan or a plan in case things go sideways with him.

Plans constantly change, vacations not taken, events not attended/adjusted but we still try to find fun for them and keep their routine as best as possible.

The boys handle people constantly in and out of our house who are part of Brayden’s care (some of which have been good and some have not).

Brayden’s needs trumps all others.  Fair or not.  Every bit of their life, has to go through the filter of Brayden.  We try to not make it seem like that is not the case but there is just no way around it.

They have seen (most often than I care to even admit) their parents completely depleted, exhausted and checked out because of dealing with the heaviness of Brayden’s medical events and needs.  They have seen fear and sadness in our eyes and in our countenance.

They know the seriousness of life as we have had discussions with them about Brayden’s health status. 10 years they have been a part of their brother’s roller coaster.  And now, as we enter a new phase of Brayden’s care in the palliative path.

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Then in the last couple of years Carter and Luke have seen and heard too much beyond just Brayden’s needs.  Things that will mark their childhood and how they see life and death. Just how many hard conversations have we had with them?!

Jeremy’s mother.  Carter and Luke realizing that their dad found his mother and we had to rush to the ER to help in some way.  Then Jeremy spent the next several (many) months rushing to find her, talk to her and to check on her.  Leaving Jeremy and his siblings in a constant state of concern and worry. Carter and Luke have seen their father physically collapse from those events.  Not even two years ago, Jeremy got the phone call that his mother died.  Carter and Luke were standing right next to him as he heard the words from his father.  Jeremy rushed off to his parent’s home.  Carter and Luke knew immediately what the call was about because of the months leading up to that day.   They found out the dramatic, awful details of the past several months (not by our choice, we tried to soften the details).  The loving grandmother that they saw many times in a week, was gone and even the previous months, she was just not herself.  Depression and suicide is now part of our family story and words they know all too well.  Since then, every holiday, birthday and event are now different since their grandmother was the center of the Jenkins activities.  The ripple of effects are constantly around.

Our house fire and rental house.  Being displaced for several months, the chaos and troubles that it brought.  And if I went into any detail about it, you just would not believe it…if anything could go wrong with the process and the rental it did.  It was awful.  A home should provide safety and comfort was just not happening.

Carter and Luke watched as other families have lost their child or loved ones, been to services and seen those moments.  People that had been a part of their lives.

This summer the boys and I planned to have a day with my brother and his family.  We planned to meet at the zoo.  As we packed the car that morning, I got a message that their 3 week old baby was up all night and they were taking him to the ER; seemingly nothing to concerning but wanted to have him checked.  The boys and I decided to still head to the zoo, thinking we could pick up the baby’s older brother and/or still see them either for lunch or at their home after they saw the doctors.  About an hour later, as we were driving to DC, I got a phone call.  It was my mom, screaming and sobbing that baby James had died, without cause or explanation.  I had to pull the car over on the highway, sat and sobbed with my mom, my boys sitting in absolute silence…they have heard that kind of phone call before.  I attempted to gather thoughts, get back on the road and figure out the next steps.  The following days were hard.  Carter and Luke saw their normally fun-loving, funny, joke-cracking Uncle Matt and Aunt Betsy broken in a way that is indescribable.  

Just over a month later, Jeremy had a surprise for my 40^th birthday.  He had all the boys situated for about 24 hours, so he and I could get away for a night.  As we were settling in to our hotel, my parents were in the car with Luke, heading to Carter’s basketball tournament.  My father got a phone call.  His father passed away.  Luke heard it all.  Luke’s healthy Great-Grandpa-at-the-Beach, had just seen his doctor a few days before and got a clean bill of health.  Luke riding with his Papa and Mimi as they had to turn the car around.  Jeremy and I left my birthday get away and headed to get Carter from his basketball.  Carter seeing us arrive, he obviously knew something was not right.  After his game, we explained to him what was happening.  We headed home so we could pack up and head to be with family. 

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In all of this, we have constantly talked to the boys about God’s plan.  The promise of heaven. It is hard to have those conversations with them.  Because, even as adults, it is hard to understand these events, let alone help your children understand.  Sometimes we just do not know how they are taking it all in.  Oh how much I want to protect their hearts, want their faith to grow and not be crushed by the seeing the hardest parts of living in such a broken world.

As we make decisions for Carter and Luke, moving forward, trying to help find the best path for them, I ask that you pray for them and for us.  So much of our efforts have been in different directions over the years. The more people that look out for them, pray for them, love them and mentor them, the better, especially as we enter the teen years. 

Thankfully Carter and Luke have been handling all of it quite well.  It seems as though their hearts have been protected in some way but there are times that they just want to be care-free kids.

And please pray for our family and friends that are grieving the loss of their children and loved ones.

Trauma and grief changes everything.

Proverbs 3:5 Trust in the Lord with all your heart and lean not on your own understanding.

Brayden's Health Update

Before getting into any details, I just have to say that Brayden is doing well (at least his version of doing well).

Brayden's spring time, left us in a scary and overwhelming position of having discussions and attempting to make decisions that no parent ever wants to address when it comes to the care and medical care of your child.  Yes, all of it was a long time coming but I did my best to push it away as long as possible.

Currently, Brayden's not-breathing/not-responding episodes have been few and far between.  Really going on about 6 weeks of no major episodes.

We still check his pulse ox regularly (take it with us too), haul around oxygen tanks (because I never want to be stuck with out a working one again).

Brayden did make it to ESY (summer school) some...not as often as I would like...and he was not home as often as he would like.

Thankfully, Brayden has been relatively stable for the summer.  We needed him to be.

And here is the cruel irony of this summer:

Brayden had a pretty bad bill of health.
Brayden's cousin, James, a three week old baby, totally healthy.
Brayden's great-grandpa, William Johnson, even though he was 94, had just seen his doctor and declared totally healthy (the man had only ever been in the hospital once in his entire life).

Brayden, whom we had been in discussion about DNRs, medical treatments or lack thereof, had a healthy summer, without any troubles.
James passed away, without cause or explanation, at the emergency room in a matter of moments.
Great-Grandpa, passed away at his beach home, seemingly in his sleep.

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God called James and Great-Grandpa.  Why?  I just do not think we will know those answers on this side of heaven.

One day, we will see.  One day, the arc of our stories will all make perfect sense.  One day, we will trace the lines of our scars and find them to have fallen in the most pleasant of places, to see in them our great inheritance.  One day, we won't need to hope, nor will we need to be healed because we will be face-to-face with the source of both, the source of everything. Jesus.
And in the glory of His face, the darkest suffering and loss we have endured will face like shadows of daybreak.  Until then, the moments of releasing our lives into the hands of a God we cannot see are the closest to wholeness we will come on this side of eternity. This is our truest healing - the healing of our souls - and it sustains us when we wake up tomorrow to an unknown but hopeful new day.

- Hope Heal by Katherine & Jay Wolf

The Real behind the Facebook Posts

Over on Facebook, I tend to post the fun, light bits happening throughout the week.  Never quite seems to be the place to share the hard stuff, unless I post a link to this blog.

This weekend, my Facebook posts felt inauthentic.  Because behind those photos of fun, Jeremy and I were tired and stressed.

Friday night post: Great concert with Great friends.

     Truth behind those photos, started Friday morning.  Jeremy and I were driving Brayden to DC for an appointment.  On the way, we got a phone call from the middle school.  Carter was sick and needed to go home.  I may have asked, "Well, how sick is he really?! Because we cannot come get him." Then there was scrabbling, trying to find someone to pick up Carter and drop him at home.
     We made it to Brayden's appointment, Carter made it home.  We meet with 10 different people going over Brayden's medical history for hours, in extraordinary detail.  Hard conversations. Then off to the lab for a massive amount of blood work (which means too many sticks for Brayden).  Absolutely exhausting.  I will go in to detail about this appointment in another post.
     We headed out of Children's, since it was a Friday afternoon in the summer, that means tourists everywhere (for the love people, please use the cross walks and follow the signs) and lots tourist and commuter traffic.  Finally made it home.  Checked on Carter, who was rocking a temp over 102 (oops, sorry I made him go to school but he did have a math exam).  Our Ms. Stephie arrived to take care of Brayden for the night and now Carter.  Jeremy and I changed clothes because lets be honest after being in the hospital all day, you feel slimy.  Headed out the door for more traffic.  Ended up being an hour late to meet our friends.  On the way, Jeremy and I thought this night out could be a really good idea or a really bad idea after the day we had.  Thankfully the time out was wonderful but, boy the next morning we felt rather old and tired.

Sunday post: Basketball Camp for Carter and Luke.
     The day started early with Jeremy and Luke heading in one direction to a basketball tournament.  Brayden and I were taking Carter to a basketball tournament in another direction, since Carter was feeling much better.  I continually underestimate how much effort and time it takes to get Brayden out the door. I go to scoop Brayden out of bed so we can leave...but Brayden has soaked his diaper, chux, clothes and bed.  Our on time departure was not happening.  And if you know Carter at all, then you know he likes things to be just so.  Being late is not something that goes over well with him.
     The car was also packed with Carter and Luke's bags and gear for basketball camp since we would not have time to go home. Being gone all day, means I had to pack everything for Brayden as well (feeding pump, oxygen tank, meds, emergency bag with all the "just-in-case" things).
    Carter's team won.  Jeremy and Luke arrived at Carter's game.  Carter was still in the tournament and now he was going to be late to camp (did I mention how much he loves being late).  Brayden and I, headed out with Luke to take him to camp.  In a span of just a few hours, we were in VA to West VA to MD for camp.  Brayden was not having it, fussing started and was not stopping.  We arrived to camp, Brayden not having that either.  I was trying to check in Luke.  Luke was so excited to find his friends that his listening skills were failing.  Trying to get him to check himself in because there was not much space to maneuver Brayden's wheelchair around.  Asking Luke about getting his room key, he had no idea.  Asking Luke about paperwork needed or dorm location or other check-in items, he had no idea.  And Brayden is fussing the entire times so I could not concentrate well either.
     The campus for basketball camp has beautiful old stone buildings, which means accessibility can be questionable.  We spent about 30 minutes, going in and out of buildings, trying to find the elevator because we got many different "helpful" directions for others.  Finally made it to Luke's room (after being in 3 wrong locations)...over 90 degrees outside and Brayden still fussing.
     Carter being late to camp, I checked him in and thought it was a good idea to get his room set up so he could just head to the gym when he arrived.  Brayden did not like this idea.  But by the time Brayden and I made it back in the car, Brayden actually like the idea of being in the car and away from the basketball camp chaos.  Carter finally arrived with Jeremy, we handed him the camp stuff and he was on his way. 

     Brayden and I followed Jeremy's truck home.  Brayden was letting it be known, that he was not pleased with his Sunday.  And the only way we know how to calm him in the car, is it roll the windows down and blast music.  Over 90 degress outside (and I already started the day off sweaty from loading all the camp gear and Brayden) with the windows down, one hot steamy car ride home.
     We made it home, Brayden in his bed and he wanted nothing to do with me.

And the bonus for the day, our dog "found" a ground hog and left for our delight in the back yard when we arrived home.

Take a breath

The past few months, Brayden has been sleeping 18-20 hrs a day, without much cause or reason.

The past few months Brayden has had severe apnea episodes during the day (not at night when we expect them to happen during deep sleep)...basically his brain forgets to tell him to breathe/exist.  He becomes unresponsive, even to the most obnoxious stimulus.  These episodes seem to come on quickly.  His oxygen saturation stats drop significantly.  We have to quickly attempt to wake him (which does not work every time) or hook him up to his BiPAP or oxygen.  Then it takes awhile for his oxygen/breathing to normalize. 

We sent video to the doctors.  Then we went in for bloodwork.  All of his blood work looks good.  All except the CO2 levels in his body.  They are elevated, not quite to a hospital-needed-level, but elevated enough to show there is a chronic problem with his breathing and his body not properly releasing the CO2.  Thus the likely reason for many hours of sleeping and the other apnea episodes.

Brayden's brain does not always seem to be sending him proper signals.  And now it is having an impact on his breathing. 

There is no intervention that we can do (or are willing to do) to improve his breathing.  We will continue to use BiPap and oxygen at home, while these provide him air, it actually serves as a constant annoyance to remind his brain to breathe.  Unfortunately, this is does not seem like something that will get better for him over time, it would get worse.  As for the amount of time that it would get worse, is very undetermined, it could be weeks, months, years. 

But we have crossed over in to a more severe/serious category with Brayden's health, as well as decisions that Jeremy and I would need to make regarding any (if any) medical intervention from here on out.

The last few weeks, Jeremy and I have been attempting to lay the groundwork for Brayden's undetermined future.  We have not shared much until now because we really needed to take in a lot of information, sort through it with his doctors and decide how best to handle it all.

We talked with Palliative Care at Children's, Brayden's pediatrician and neurologist.  All have given their honest opinions and helped lay out our next options.

Here is where we are thus far:

• Brayden has been consistently having apnea episodes where he is in unresponsive.  We have been toting around oxygen tanks and often his BiPap machine, wherever he goes. We are trying to figure out the best way to manage the episodes, since they are happening several times a week. With oxygen or BiPap we will continue to use as needed during the day (he is on BiPap for bedtime, through the night already). 
• Because he is having these not-breathing episodes, we have to plan for different scenarios in case his breathing cannot be corrected through his supplemental (nasal cannula) oxygen or his BiPap.  Putting together a plan that would include medical interventions that we would allow or not allow.  Plans that his nursing agency, school, doctors, hospital would be aware of in case of emergency.  Children's Palliative Care team will help us put together a written plan. 
• To help facilitate care through Brayden's doctors and the Palliative Care team, we are looking into an additional nursing agency that would come to the house every couple of weeks, kinda like a home doctor visit.  This would be help his doctors monitor Brayden better at home.
• Technology has changed since Brayden was a baby.  Brayden has never had a diagnosis.  We have been referred to the neurogenetic team to look at a couple of possible tests.  With the technology available now, through bloodwork, we could have some insight into Brayden's brain/body.  Whatever the findings or diagnosis, it will not change or have any impact on Brayden's treatment or day-to-day life.  The meeting with the neurogenetic team and bloodwork will be in the coming weeks but the results could take months.
• MRI, the neurologist is requesting a MRI (also helpful for the neurogenetic doctors).  Brayden has not had an MRI in many years.  But having a current MRI, they could compare his previous ones to see if/how there has been any degeneration.

Basically, the overall plan is to focus on Brayden's comfort and quality of life, rather than seeking out any major medical interventions.  All of his doctors agree with this (in fact were the ones who brought it up to us anyway).  Also for Jeremy and I to plan for what-if scenarios, so that he and I are on the same page and we can communicate that to those who help care for Brayden day-to-day or in an emergency.

Honestly, we are attempting to just shift in our mindset of how we take care of Brayden.  For example, I spent many years talking (or arguing, depending on who it was) with Brayden's home care nurses about his time in bed.  I have always been adamant that he would NOT be a bedridden boy, basically he was a little boy and needed to get out participate in life, however he could.  Now, it is more like...well, Brayden is so very content and happy in his bed so why push him. He loves his bed.

We will be focusing more on Brayden being content, comfortable and happy, rather than seeking further medical interventions (but still continuing with his current plan of care) and even just in basic things like not forcing him to school all the time (school is still good for him but I will let up with trying to get him there as much as possible).

Lots of very heavy, hard conversations over the past few weeks.  We very much trust and respect Brayden's pediatrician and neurologist, who are all on the same page.

And we whole-heartedly trust God, for whatever the plans may be.

One thing we do not have to worry about is Brayden's weight...the scale hit 85 lbs this week.

For the love of football

A day in DC for spring football.  And it happened to be Mother's Day. We were determined to make it a family day (forced-family-fun).

Brayden decided to have a breathing episode on the way to the game.  A quick Chinese-fire-drill so momma could sit in the back to monitor Brayden's breathing and hook him up to oxygen.

Game time and Brayden was entertained by the throw-back 95.5, 1990s music (Let me clear my throat...).

Game was won but Carter was crushed, literally.  A play gone wrong, he landed on a player's helmet and then the biggest kid on the field (possibly 3x the size of carter) landed on him.  Hip injury, trip to ER and thankfully a hip contusion (not a break). 

Nothing but fun and Mother's Day lunch from the concession stand.

Those lovies

Brayden's animals.  His aromatherapy animals.  His favorite things.

His puppy has been the fav for quite a while.  The favorite animal gets prime position in his bed, placed by his left shoulder for the best possible cuddling.  Puppy has held that spot for many months...until froggie came along.

Brayden actually head bumped puppy out of the bed.  Rather proud of himself, as you can see on his face.  He wanted froggie there.

 And there froggie will stay.

This guy is 10

It is his birthday and we send him to school.

He is totally thrilled (or in total denial).

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.
www.jillshouse.org/donate
comment: In honor of Brayden's 10th birthday.
for more info on Jill's House - jillshouse.org

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

Adaptive Rec Day

Every year a local high school hosts Adaptive Rec Field Day.  Special Ed classes come to the school for all the fun.

And it all starts at the entrance of the school.  Welcomed by the marching band, mascot and the school halls lined with high school students (coaches for the day) cheering as the students arrive.
Then everyone heads into the gym for all the fun.

This year, big brother Carter came for the fun.

 

  

  Finish it off with a dance party and awards.  Such fun, always fun.

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.

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.
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