Tuesday, July 31, 2012

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.

Wednesday, July 25, 2012

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.

Tuesday, July 24, 2012

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.

Monday, July 23, 2012

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.  

Monday, July 16, 2012

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.

Sunday, July 15, 2012

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:

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).