Home

Brayden made it for 24 hours without pain medications, his pancreas numbers were down and we were able to take him home.

When he entered the hospital, his lipase levels were 3000.  A normal level could be around 7-160 (depending on which doctor says is normal).  Brayden's pancreas has been a question for over 4 years.  His lipase (and amylase) is checked most times he has any blood work.  His levels have been as high as 1300-1500 but never reaching 3000 like this time.

The questions: What is going on with Brayden's pancreas?  Is it causing him pain?  Does it cause problems for him?

While we know that his lipase levels have been high several times in the past, we do not know if it really causes him problems.  We do know that he has insufficient pancreatic enzymes and we add enzymes capsules to his food.  In 2009, Brayden had an ultrasound of his pancreas and a MRCP (like an MRI).  Things looked good then.

The doctors do not know much more than that.

We do know that during this hospital stay, Brayden entered with numbers of 3000, well over the normal range and he was screaming in pain.  Screaming and screaming like Jeremy and I have not often heard from him and it was terrible. Only finding respite when he seemed to exhaust himself and sleep for 10-20 minutes then waking right into a scream.

And me trying to comfort him in any way possible.

The next day Brayden was much more comfortable and his lipase had already decreased to 600.

Yesterday afternoon, he was feeling much better so we wandered the halls of the peds wing, the playroom and the courtyard.  He was happy to be outside and playing with the fancy lights.

We arrived home this morning.  Actually discharged early this morning...in time to hit the morning DC rush hour but taking him home made the bit of traffic very bearable.

We will check blood work again next week.  If Brayden has another episode like this (high numbers and pain) then we may do more imaging.

For now, we rest.

It was a good run but we are back

Brayden made it several months without a hospital stay.

He was admitted to the hospital on Sunday.  Started with seizures that led to finding pancreatitis.

Saturday night and into the early hours of Sunday morning, Brayden was miserable at home.  Jeremy and I seem to be rotating through the night tending to him.  Early Sunday morning we realized, Brayden was having more than a rough night, he was seizing.  We gave him a does of Diastat (he emergency seizure med).  That seem to help a bit but shortly after giving it, he was still going in and out of seizures.  We gave him another does of Diastat, he slept for a few hours.

Carter, Luke and I headed into church, while Jeremy stayed home with Brayden.  When I arrived home form church Brayden started seizure activity again.  We had to call 911.

The ambulance crew arrived.  The driver had been at our house several times, as well as the medic.  They both said they were happy to not see us for a while.  The medic has done several runs to the hospital with Brayden.  She confessed that for those first few years of Brayden's life, the crew was always very worried when they would see our address come up.  But that she thought Brayden looked much healthier since the last time she had seen him.  It was nice to have the crew already know Brayden and his history, they just load him in the ambulance and go to the hospital (not trying to do things in the ambulance).

We arrived at the hospital, still going from seizures back and forth to a deep postictal state.  The ER doctor was not convinced Brayden was seizing.  Thankfully the nurse had been with Brayden before and confirmed that this behavior and movement was not Brayden's norm.  They gave him a dose of Ativan, which helped.

In the meantime, the ER doctor ordered labs to see if any infection, virus, etc. could be the triggered for the seizures.

 We have been to the ER more times than I can recall, I do not recall ever finding a reason for the seizures.  We expected to just be at the ER for a few hours to get the dose of Ativan, make sure the seizures were under control and then we would be heading home.

The ER doctor came back with the labs results.

The were concerns with the labs.  His lipase and amylase were very high.  Brayden had pancreatitis.  We had to be transferred from our local hospital to the larger Inova Fairfax.

The transport team arrived in the new fancy pediatric transport ambulance (only 6 months old)...it was nice, like a cross between a motor home and ambulance.  One of the transport guys had been with Brayden before (once to Childrens and maybe a couple of times to Inova Fairfax).

So off to Inova Fairfax to be admitted.

Brayden has ongoing problems with his pancreas.  He has had pancreatitis in the past and he has a pancreatic enzyme deficiency. But this time he has been in pain, screaming for hours and hours pain.

Brayden does not respond well (saying that nicely) to morphine, so we had to spend too many hours trying a pain medication that would work for him.  Finally good doses of Toradol have helped.  There is not much to do for pancreatitis, just NPO (no food) and manage the pain, so we have to wait it out.

About 10:00 p.m. last night Brayden had an ultrasound to check his pancreas.  Unfortunately the tech and then the radiologist could not get a good picture because Brayden had too many gas bubbles blocking the view.

Brayden did sleep much better last night and seems comfortable this morning.

Now we wait for labs to check his lipase and amylase levels.  If they are still very high, then he may have a CT scan.  If his levels have gone down and he is handling the pain better, they could be talking about going home but not until this evening.

to Malawi

Brayden's old AFOs (braces for the ankle and foot) are now a good fit for little girl in Malawi.

Brayden's physical therapist spends her summers in Malawi helping many people.  We were able to send some of Brayden's old braces with her, in case they could work for a child.

I received an email this week from the physical therapist.

The other day, a little girl came into the clinic to get her medicine for HIV/AIDS. The doctor noticed that the she couldn't walk and asked me to provide physical therapy for the child. We worked together during the morning, and Brayden's old AFO's fit her perfectly. I think she has cerebral palsy from having severe malaria as a child (not from HIV). 

I wanted to thank you....how did you know that there would be a little girl half way across the world who needed those braces:) Very awesome. I am very grateful.

How beautiful is this little girl and how precious that Brayden could help her in some way.

Vacation story #2

Packing Brayden for a vacation is quite a task.  All of his gear, equipment, food and medications, it fills the car.

Brayden has 9 daily medications.  We also have other just-in-case medications, including his Diastat (for seizures) and Tylenol with Codeine.  His food requires 5 different things to be mixed together that makes his special ketogenic diet.

The place we rented for the week had a little kitchen, where I set up Brayden's "station" and it takes up a good bit of the kitchen counter with the medications and his food.

Ok, on to the actual story...

After a morning on the beach, Brayden and I headed back up to the room.  Jeremy, Carter and Luke stayed at the beach a bit longer while tended to Brayden.  Brayden and I rolled into the room, when the condo phone rang.  It was the front desk.

Front Desk, "Mrs. Jenkins, do have someone with you by the name of Brayden?'
Me, "Yes."
Front Desk, "One of his medications was found in the common area.  A cleaning staff turned it in and we have it here at the front desk."
Me, "Alright, thank you, I will be right down."

Before we headed down to the front desk, I scanned over his medications.  The Tylenol with Codeine was missing.

I went to the front desk and picked up the medication.  I had to talk to them about the Codeine.  All of the just-in-case medication had no way of accidentally getting out of our room.  It was all tucked away in the corner of the kitchen counter.  We did not use this medication on the trip, so we did not touch it.  There was no way it could have been accidentally swept away or taken out with the linens.  The bottle also looked like many of the other medication bottles.  The Codeine was really the only easily recognizable name, unless someone is familiar with seizure medications.  Codeine is also the only narcotic medication we had in the room.

I opened the bottle of Tylenol with Codeine, there were still pills inside.  I have no idea how many we had or if any were taken because we do not use it often.

I was bothered that of all the medication in our room, that one was found in the common area.  Someone took it from our room and not only that, they must had stood there and read all of the medication labels to find it.

I talked to the manager with no resolve other than they would talk to the cleaning staff and only have a cleaning supervisor clean our room for the remainder of the week.

I went back up to the room, checked through all of the medications and all of our valuables to see it anything else was missing;  nothing else was...it was only the Codeine.

A little fun for Brayden

Brayden did enjoy his time at the beach (but hated to put sunscreen on).  Loved to sleep under the umbrella and did quite well catching waves.  Jeremy would sit on a boogie board and hold Brayden is in lap, letting gentle waves roll up and get Brayden wet.  Sometimes it would take Brayden a few waves to like it but then he would settle in.

We would take Brayden for walks on the beach and collected lots of shells (courtesty of his brothers).

Brayden did NOT enjoy our evenings out.  Dinner, to minature golf and usually ice cream.  Most evenings, Brayden did not even make it through dinner.  One evening, Brayden went into an awful seizure.  It went on for 20+ minutes.  And I had taken his emergency medication out of the car because it was over 100 degrees heat.  Shortly after the food was ordered, Jeremy dashed out to the car to drive back and get his medication from the condo.  A few minutes after Jeremy left, Brayden came out of the seizure.  I called Jeremy to come back to the restaurant and he made it back in time for the food.  For the most part Brayden's seizures were under control for the vacation.

Brayden did hang out with his great-grandpa while we played some minature golf.  Thankfully he was pretty well behaved for him.

Vacation story #1

We stayed at a place right on the beach.  We rented an umbrella and chairs for the week.

Every morning we started at the beach (sometime around 8:30 a.m., after going out for breakfast).  Not many people on the beach for a couple of hours, just joggers/walkers and some people fishing...and of course a few other families that were blessed with early risers and started at the beach early too.

Carter and Luke would wander from playing on the beach to riding the waves.  Jeremy and I would take turns on who was in the water with the boys.  Brayden was always parked under the umbrella, peacefully enjoying the sounds of the beach.  He would usually enjoy a nap.

One morning (sometime 8:30-9:00 a.m.) Jeremy was in the ocean with Carter and Luke.  Brayden was under the umbrella settling in for nap.  I scooped up my camera and stood on the water's edge to take a few pictures of the boys.  My camera was fogging up from the humidity so I only took a few pictures.  I came back to the umbrella and was talking to Brayden, when a police man (the beach police that drive up and down the sand) approached me, peaking under the umbrella to see me.

Officer:  "Ma'am, it was reported that your child was left unattended." (referring to Brayden)
Me:  "I am sorry, excuse me?"
Officer:  "Ma'am, someone was concerned and reported that your child was upset and left unattended."
Me:  "While I appreciate some one looking out for children, we have been here the entire time.  I did walk to the water to take a few pictures."
Officer:  "This is a safe beach but please make sure you keep an eye on your children."
Me:  "Ok, thanks."
And he said some other things but I was not listening quite so well at this point because I was focused on the part when some one said my child was left unattended.
Kind of jarring.  We have no idea who said anything.  Why anyone would have thought he was left unattended; maybe someone walking on the beach?  a lifeguard?  Some one from the hotels/condos looking down at the beach?  There were not that many people on the beach that early in the morning.  And someone thinking Brayden was upset was really just his happy 5 year old noises, not a little baby crying.

The funny thing is...Brayden and I are attached.  We have been attached from the moment he was born.  The only break I get is when we have his nurse.  He is the most "tended" to person in our family.  

The best sound ever

is Brayden's happy noise.
We RARELY get to hear his happy noise.  He has mastered his mad, angry, and sad noises.  But those of delight and happiness come on very few occasions.  We can go months and months without hearing his happy noise.  I know that he is content but not much more than that.  He has a great poker face, not showing much emotion.

Well, we know that he loves to be home and he loves to be in his bed.
We arrived home this weekend from our beach trip.  Jeremy pulled up to the house and the first thing I did upon arrival was place Brayden in his bed so we could get the dreadful task of unpacking the car completed.  About 15 minutes after putting Brayden in his bed (all of us fussing about the house putting things away), I heard him "talking".  He was happy to be home...thrilled to be home.  Perhaps not a fan of vacations but definitely a fan of his bed.

He is actually squealing with delight; a noise I can count on one hand that I have ever heard from him.  Oh how it makes my heart leap with joy and my eyes well up with tears to see his smile and make such wonderful noises.  I could watch this video over and over again.

Brayden...one happy boy from Carrie Jenkins on Vimeo.

We have been enjoying summer

I have not blogged much because we have been busy enjoying summer.
This past week we headed to Myrtle Beach to visit my grandfather (who will soon be 90 years old and able to hang with my crew all week).

Many more details about our trip to come...we had a few crazy moments...police, missing medications...
Most importantly we had a vacation.  Here is a little taste of Brayden in the water:

Brayden in the waves 2012 from Carrie Jenkins on Vimeo.

National Ice Cream Day

July is National Ice Cream Month and today in National Ice Cream Day!
In 1984, President Ronald Reagan proclaimed July as National Ice Cream Month. He also established National Ice Cream Day as the third Sunday in the month.


How can we celebrate?!  Give Kids the World (a very special to us and many Make-a-Wish families) hosts their Ice Cream for Breakfast campaign.


This was on this year's campaign site (from our event last summer).

icecreamforbreakfast.org

Brayden on vacation

This trip was a quick one.  Drive to Outer Banks Monday and drive home on Thursday.  We were invited to stay with our friends during their vacation.  I loaded up the car with Luke (my middle boy) and Brayden.

Brayden has been at a really good place, medically.  No major issues, no emergencies, etc.  I felt pretty comfortable going away (without the help of Jeremy or the nurse) for this quick trip.  For any previous trip that we have taken, I make lists.  Lists of everything Brayden needs.  I meticulously pack everything and check things off the lists one by one.  A few times in the past, I have emailed a couple of Brayden's doctors to let them know we will be heading out of town, in case they get a call of random hospital.  I usually find the location of the nearest hospital...just in case.

This trip, I packed quickly...not from lists, just from memory.  I also made no plan for any emergencies.

Brayden did like the ocean.  Very relaxed on the beach.

Loved the king sized bed and lots of kids climbing in bed with him (he loves attention).  Loved laying bed, with the door open listening to the sounds of the ocean.

One night, he was upset and I could not calm him.  I tried to snuggle him but he was thrashing around.  I thought he did not want to snuggle and he was trying (in his own way) to push me away.  He continued to be awake through the night.  Luke and I left him in bed and headed for the living room couches to get some sleep.

I checked on him in the early morning and realized that he was having a seizure and was probably having one since the middle of the night.  I gave him all of his morning medications, hoping that they would take effect and help control this seizure.  The seizure continued.  I needed more medication, that I did not have and did not pack.  I called one of Brayden's doctors.  She called in a prescription to a pharmacy.  I left Brayden at the house (watched by a few adults who care for another special needs child).  I drove 40 minutes to a pharmacy that did not have the medication.  I spent more minutes calling pharmacies to find one that did have the medication.  Then I followed the GPS to the wrong location (I wanted CVS and it kept taking me to Rite Aids).  I finally got the medication and drove back the 40 minutes to the house.  I was not taking him to the little Outer Bank hospital.

When I arrived back to the beach house, it seemed as though the seizure was stopping.  I still gave him the medication.

We had planed to drive home that afternoon (and my friend ride with us).  Brayden SCREAMED for the first couple hours of the trip.  Then he went into another long seizure.  We had to stop and give him yet another medication.  I was bordering on giving him too much medication but I did not want to go to a hospital that was not one of his normal ones (Inova Loudoun, Fairfax or Childrens).  The medication did work and he passed out asleep/snowed by medication.

I gave myself a headache and some new/deeper wrinkles from the stress.  We finally arrived home.  I HATE seizures.  Really, really hate them.  I hate what they do to his body.  I hate that he looks trapped and sometimes it seems like he is screaming for help.  I hate that I cannot do enough to help him.

We did have a nice time at the beach.  Just not a nice ending.

Tooth Fairy?

We have been on a little vacation with friends (but more about that adventure later).

The big news from the trip is that Brayden lost his first tooth.

I saw all of his teeth that morning.  Later that afternoon, I saw a missing tooth.  I have no idea where the tooth landed...perhaps in his belly (that later became part of a diaper, I am sure).  We will just tell the boys the tooth fairy got it.

The funny thing is, he was fascinated with the hole.  He would push his tongue over and over it.  Then he managed to get his finger right there to check it out (shocking that he could pull this off).

Last day of School

Brayden loaded the bus for his last day of school.

Later in the morning, his class had a party for a boy graduating out of the preschool program.

I promise everyone is much happier than they look in this picture.  They really are adorable kids.

How about those cheeks and double chin?!

Field Day

Brayden was able to participate in his school's field day!  He had a t-shirt made (by someone at school) for field day.  He went around the playground, walked the therapy dog and even got a hat.

When he got home, he was wiped out!

Moving down

Brayden is now a first floor dweller.  His accessible room has been completed.  And I have been consumed with getting to ready for him.

It was actually completed a few weeks ago but we were waiting on approval to move his bed (a SleepSafe Bed, a great hospital bed).  The insurance company had to sign off on moving his bed!  Otherwise, if the medical equipment company disassembled it and reassembled it with problems, they would not cover damages or replacement.  Seriously, insurance approval to move a bed from upstairs to downstairs.

Yesterday morning, a crew came to move the dressers, etc.
Then came the medical equipment company to move the bed.

Brayden's room was ready.  I got him off the bus and wheeled him right in to his room.

No longer upstairs.

His former upstairs room. 

Now downstairs.  And he did just fine.  The room is much bigger than his upstairs bedroom and has a good echo.  For the first couple of hours in his new room, he would make his "talking" noises, very loud and listen to his echo.

The new downstairs room.

We have a huge shower, with a new shower chair to come.  And a closet...did I ever mention I love everything organized (as I tell the boys when cleaning up, "Everything has to have a happy home, if it does not, then it does not belong in our home"; aka everything has to have a place).

Still getting things situated and decorating to be done but he now resides on the first floor.

In some way this feels like a significant milestone.  My stomach has been filled with butterflies and tears ready at any moment (although no tears yet, it just feels like they are right there).  I am not sure I can articulate why...but I will try.  For starters moving downstairs became a permanent decision.  A decision that we will live in this house for a long time.  A decision/coming to terms with the plan to make an accessible home; we have a child who needs an accessible home.  We do not have first words and first steps milestones with Brayden, we have first wheelchairs, first feeding tubes and accessible rooms.  Some how, in the middle of the excitement of the new gear and things for Brayden there is still a bit of sorrow...sadness for him, that his life is not easy nor is ours and the extreme measure we take to make it better.

I remember years ago, visiting a friends new home (while it was being built).  They needed a one-level home for their special needs child.  I remember driving away and thinking, That has to be hard; coming to grips with the fact that you have a child that will never walk and you need a house suits the child's daunting needs.
Clearly, I thought this long before we had Brayden but I may have been pregnant with him.  Since then I realized that many decisions come little by little and in steps that you may not even realize at the time.

This side room that is now Brayden's room.  This extra side room on the house was a last minute decision when we were building the house. We had a contract on the house, all of our items picked out, floor plan designed, etc.  This side room was not on our plans but we changed our mind.  We called to find out if we could make changes.  We added this room and made adjustments to the plan.  Little did we know that God had a bigger purpose for that room than just adding square footage and curb appeal (and you know God is concerned with the curb appeal of our house, right?!).

The room upstairs was the room we put Brayden in when we brought him home from the hospital as a newborn.  And the baby to child that we brought home from the hospital many more times and placed him in that room...oh if those walls could talk...they would describe the many hours I sat in the rocking chair, not being able to sleep, terrified, sometimes holding Brayden; other times just staring at him sleeping completely baffled with the thoughts of caring for him and how this was our life, our son.

Moving him downstairs, is like closing a chapter.  Moving forward.  Brayden has been doing well that past several months.  We feel settled/content with this life that God has chosen for us.
Brayden moving downstairs, while we move on.

His "happy" place

Brayden can have many days in a row of being unhappy (and I am being kind by just calling him unhappy because he kicks and screams like someone is hurting him).

For several days in a row Brayden has been unhappy.  We were out for lunch on Sunday and Jeremy ended up sitting with Brayden in the car.

The ONLY way that we have found to calm him down the past several days is to hold him...his belly to our belly, head resting on our chest and his legs wrapped around our waist.

The position is very new (like never in his life, until the past several days, new)  I neither would have thought he liked this position but when we are desperate, we try to calm him in whatever way we can.

Every day this week he wanted demanded to be held like this.

Yesterday afternoon, he kicked up the screaming/crying; which turns into violent retching (he does the upset thing to the max).  Of course this happens when I am trying to help Carter and Luke with homework and fix dinner...and the nurse is gone for the night.  I kept going in and out of his room trying to console him: music, movie, lay on back, lay on side, lay on the other side, sit up, etc.

Finally Carter and Luke were situated.  I could hold Brayden.  I tried him this way and that way; of course he ended up like this.

I tried a couple of times to change his position (since my back was hurting) and the screaming/crying started back up.  I feared to move him and unleash his beast.

So we sat some more.  I whisper-yelled (a talent only mastered by moms) for Carter and Luke to get ready for bed and tuck each other into bed.

I sat with Brayden for another hour because any deep breath, sneeze, or wiggle from me caused him to start up again.  But he continued to settle into this position and eventually fell asleep.

I did not want to wake him so we sat a bit longer then I tried to gently transfer him to his bed...that was not as smooth as I would have liked....

Botox day

Today was a day for a round of Botox.  This was his third time for Botox in his legs.

Two hours of waiting in pre-op.  He was happy comfortable and apparently talked more when he heard other children.

15-20 minutes in the surgical room to get the Botox.  We barely sat down in the waiting room before the pager went off to go see him.

Ten minutes in post-op.  He woke up very mad at the PACU nurse, probably for waking him up and poking at him.

All day he has been a happy camper, "talking" all day long with his happy noises...hospitals are no big deal for him.

Brayden and the chicks

While we all know Brayden is a ladies man...I am actually talking about real chicks, baby chickens.

Papa Warren had his little chickens out for the kids.  Brayden was trying to make a new friend with the little chick.  At first, not sure about it, something soft, squirmy and making strange noises, he did like the little chick.

 He was trying to rock his head over and down to get a better view of the chick.