Tag Archives: medicine

leaving the battlefield

Over the years, we have been working and praying toward life becoming just a little easier. Hoping for less pain and more joy for Riley, a little more sleep, a few less knocks, a little less struggle… Easier never really comes along despite our efforts; it simply changes. bday celebration

Letter to the Governor

June 16, 2015

 

Office of Governor Rick Scott

State of Florida

Trough’s and Peak’s: A Hitchhikers Guide to “Say Yes to Drugs”

When I was young and seeking a career path,  I wish my intuition/Fate would have led me to train in the practices I would actually need now that I am a special needs parent (maybe I should have paid more attention to the Ouija Board or Crystal Ball… hmmm where did I put that fortune cookie?).    Anyway.  Now, with a complicated (love these Politically Correct words!  OMG) eleven year old son,

Vitamin D Deficiency

Our family friend, Laurie, volunteered to share a paper she wrote on the importance of Vitamin D.  As caregivers, it can be challenging simply to keep up with daily tasks let alone keeping up to date on the latest health information. 

Laurie sent this to me noting: “I was thinking about your kids getting sick a lot. They could be deficient, esp. Riley because he gets very little sun exposure and is on antiseizure meds.  I have been learning a lot lately about the fact that a lot of us don’t have enough vitamin D because we don’t spend enough time outside (getting full sun exposure for at least 30 minutes a day). I am very interested in the work of the Vitamin D Council and have contacted them to get involved in spreading the word. I have summarized what I have learned in the attached article.”

Hydrate, Hydrate, Hydrate…

Since his very first hours, Riley has taught John and I to be meticulously aware of his comfort and health far beyond the needs of any typical child.  Each special needs child has a condition and experience unique to themselves; however, our shared experiences may still benefit one another as caregivers and attentive parents.  This is especially relevant when addressing medical issues.  There are also times I must remind myself to remain vigilant over every aspect of my son’s health no matter how long the list becomes.

Day Break (Brake)

Opening my eyes the sky was lightening with the break of day.  Already past 6 am, simply still being in bed at this hour is a blessing.  I took a moment to appreciate the quiet for a moment.  The day is a little easier to face than it used to be.  Riley rested and in turn I rested.

A sharp intake of breath and a quick rhythm followed.  Up, lights on and over to Riley in full seize.  Gathering him us and trying every trick in an attempt to stop that seize as fast as it came on.  One minute goes by.  “Riley, mama is here!”  “Riley, come back to mama!”
A second minute goes by.  Time to pull out the Diastat for seizure intervention.  No, I object!  “I am right here with you, Riley!  How can I help you.”
I know it’s time.  No, wait another moment.  It must stop.  Drug intervention means both our days are gone.  We need our days.  Intervention means that nothing will happen in our day beyond the recovery of that drug.  “Please Riley, it’s time to stop.”  We have reached two and a half minutes.  Put him down mommy and get the drugs!  No!  “You can stop this, honey.”
Losing our day.  It has been one of our patterns in life.  This is Riley’s life.  This is my life.  No, we are trying for Riley’s sake…. for my sake… for the sake of this family to have a little bigger life than this.  We must have our day.  Riley can go to school and play music and laugh with his teachers and classmates at circle time.  I can try to be an adult and get a life.  We must all move on beyond Riley’s birth circumstances.
It is time for drugs now!
Putting Riley safely down on my bed while I set up the syringe… the seize finally slows and stops.  Just in time.
Then the next reaction begins with leg spasms.  Big, strong, frightening, stressful leg spasms.  One foot shoots out with a tow poking into my gut.  Can I get my arms around him enough for comfort while trying to alleviate his pain?  A forearm hits my head and a little hand grabs desperately pulling at my ear and hair before flying open again.  “Mommy is here Sweetheart… I’m trying to help.”
Five minutes go by in constant spasm.  And then 10 have gone by in what looks nearly like a battle.  Soon it is nearly 7 am.  Riley’s tired body begins to relax.  I set him up comfortably on my bed and prepare for his school day.  He needs his day.  I need his day.  Very soon we will both have forgotten this past hour and moved along.
I return to change his clothes and am greeted with a smile.  “Oh Sweetheart, you are beautiful.  Good morning to you.”  Sigh, wet bed clothes… think I’ll start my day washing sheets… again….
School art by Riley
We are all special… by Stacie Wiesenbaugh

Seahorse to Seizure

Our weekend started of full of promise and excitement.  Our weekend began with a visit from “ReRe,” John’s mom. Ronan chose to bake Pineapple Upside Down cake with his grandmother.

Little Miss L. shared joined us for an evening and brought along her latest camp project from the Bonita Art League.  Note, Ronan has discovered camouflage tie dye…. no stopping him now.

Saturday morning, having arranged for Ronan to spend the day with ReRe and Riley with a respite nurse from PIC, John and I were able to have a day together.  We drove northward to fossil dive off Venice Beach.  The primary goal was simply to have some fun together.  Fun has been sacrificed in our lives with the intensity of caring for Riley.  Sometimes we wonder if we even remember how to have fun.  The opportunity for respite is very new and rare in our lives that time together for just the two of us is nearly impossible.  We had some great fossil finds… those will show up later on The Shark Tooth Guy.

My happiest moment was stumbling over a Seahorse  (no we don’t currently carry an underwater camera so I found a link).  Over the past 17 years of diving I have seen many incredible creatures, however seahorses have eluded my all but once before.  This time I made the discovery myself.  She allowed my to reach out gently and she moved onto my hand and then to John before we had to move on.  Those encounters together are magical.

We were home by late afternoon and reality quickly reasserted itself.  Do John and I really have the right to freedom at all?  Riley was suffering for a day without us.  He refused to eat dinner and vomited up his medicines.  Perhaps positioning and activity for Riley throughout the day has become intuitive to us but it seems that even R.N.’s dedicated to special needs children cannot work with him properly and we pay for that time away.  Of course he lost all his medication.  Riley took Zofran for the first time and to our great relief the vomiting stopped.  However, by morning Riley suffered Seizure #82, needing Diastat to end the event, and was mostly unresponsive throughout the day.

We want to believe there will be some relief for all of us…. mostly for Riley, but as his parents we need a little joy in life too.  Or perhaps we do not need those moments, we certainly pay for those few stolen moments dearly.

We are all special… by Stacie Wiesenbaugh

My Fragile Child – Guest post by Christine

Here we go again…
Experiencing yet another night and morning of crying and screaming and thrashing about, I finally decided to take my girl to the ER.  Something was definitely distressing her greatly; nothing was helping: Advil, hydrocodone, diazapam, etc.  I tried everything we had/I could think of to calm her and make her comfortable.
My less than enthusiastic husband “volunteered” to join me-as usual starting out with the same old same old “every time we plan to goon vacation something happens to her” (we are supposed to be leaving on a family road trip next week) – really dear? I am stressed enough and do not need you to add to it with your comments.  Please calm down to help us through this chapter of Kaet’s life.
Pack her backpack, make sure we have the feeding tube extensions (NCH doesn’ t have them- found that out the hard way last trip to the ER), DVD player -an absolute must have, extra clothes, diapers, towels, juice,etc. (all the necessities of leaving the house with our special girl). Change the clothes she is wearing – absolutely soaked with sweat from thrashing about all morning, load the wheelchair in the car, Kaet in her car seat and off we go.
The ride there was actually uneventful; almost had my doubts that we needed the ER visit, but knew I would regret it if I didn’t make sure she was okay.  We arrived at the ER and thankfully there were only a couple people ahead of us (adults that wouldn’t be going to the peds section) this should be quick, right? Of course not, we waited and Todd wheeled her back and forth through the waiting area while she cried and screamed in her chair. Taking too long he decided to try to carry her around (5ft tall and 80 lbs) until they could get around to her.  I could see his frustrations building.
Finally, after what seemed like an eternity, we were called upon.
Staff: “Will she be cooperative for stats?”
 Me: ” No, not really!”
Staff: “Do you know how much she weighs?”
Me:  “Approximately 80pounds.“
Staff: “That won’t work , the Doctor will need an exact weight.  Will she stand for a minute onthe scale?”
Me: “No.”
Staff: “Can she sit on the other type of scale?”
Me: “No”
Even so, back to the room to get stats we go – all the while my husband carrying our “little” girl! UGH!
After the adventure of getting her weighed and attempting to get an O2 reading on a screaming child; we finally were taken back to the exam room to see the Doctor, so we thought. We arranged Kaet on the stretcher as best we could, set up her DVD player and tried to keep her calm.  It was then that I noticed it; what was that strange “ball like” look to her collar bone? – Yep, before the Dr. even walked in, it was obvious, we were dealing with a broken collar bone.
Smiley Face
The Doctor walks in after at least 15 minutes (mind you I said there was no one in Peds at the time). After explaining the events lead ingto our decision to come to the ER, I pointed out to her what we had seen.  She touched it and said yes, looks like a broken collar bone.  We’ll have to get anx-ray.  By this point Kaet was out of control; I was almost lying on top of her to try to keep her from thrashing about and Todd trying to keep her arm from moving around.  I had to ask the Doctor for something to help relax her; from the options given, my best guess at what would help was Ativan.  Again, we wait as they take their time getting the meds, then wait for it to take effect, NOT!  My girl is a fighter, kept on going screaming,crying and thrashing about.
X-ray came in with a portable machine to make it “easier” –we did our best to keep her as still as we could ; did pretty well… only took two tries to get the x-ray.
Smiley Face
Nurse came back to tell us the Doctor was waiting to see the results and asked if there was something he could do for us. OMG, PLEASE get something to help relax her; obviously the Ativan was doing nothing.  Again we waited and waited and waited…Finally,I asked my husband to take control of Kaet, I was going to see what the heck was going on…
As I approached the nurses’ station, I saw, the Doctor, the nurse and two interns/assistants (not really sure) chatting.  Immediately the nurse responded with “we are waiting for the morphine to come up and the Doctor is just looking at the x-ray.” The Doctor then stood and came over to explain the nature of the fracture and that she had a call in to Kaet’s orthopedic surgeon to see how he wanted to handle it.
I went back to the room to help my husband again while we waited for the morphine.  I explained to him that Kaet’s Ortho was not on call this weekend, but his associate and theER Doctor was waiting to hear back.  As soon as I knew it was the Doctor’s associate, I knew we were just going to be sent home and told to go see the Doctor tomorrow. – BINGO! – ½ hr later the Doctor came in to tell me what I already knew! During the wait, the nurse did bring the morphine, so Kaet was finally trying to calm down, but having difficulty getting her breathe as she worked herself up too far.  Her lips kept turning blue as she tried to suck air into her nose (she couldn’t get her breathing pattern straight) and kept getting scared and then hold her breath.
Above: Kaet peers over at her mom during horseback riding, Oct. 2010.
Finally the morphine kicked in and they were able to bandageher arm around her torso to help keep her from moving it.  Kaet was OUT!
Smiley Face
  And we were on our way home with Rx for morphine in hand to help get us through the night.
As I sit here writing this, I listen to my girl moaning in discomfort, but finally “relaxed.”  Tomorrow we will head to the Orthopedic and see what the prognosis will be.  I do know however, at Kaet’s last checkup we had already discussed the possibility of this event inevitably occurring (Kaet had bone deformities) and that we would be doing surgery to plate the bone to prevent this from happening again.
My wish to share is for our special needs kids to be treated just that and not be cared for following “normal” protocol when being taken to the ER – if we are there, there is ABSOLUTELY something wrong and they should be urgently; especially when they are the ONLY patient in that area at the time. Do not just “avoid” us by putting us in the room in the corner and shut the door. We are there because we need help!!!  – Our kids cannot understand what is happening and cannot be “reasoned” with to remain calm.
It took all had to keep myself strong for my girl; the last thing she needed was mommy breaking down on her too.

“Patient Rights: As a Patient, you have the right to:

  • Receive considerate and respectful care.
  • Expect reasonable access to and continuity of care….”
By Christine

Wheelchair Cleaning by Daddy

Dinner was delicious!
Riley could not get enough.
After having his fill he sat and contemplated his meal from the safety of his wheelchair.
Then perhaps dinner was not quite sitting right and back it came.
The first warning arriving when his leg tremors appeared to be motorized.
Everywhere!  Remember The Vomitorium from the movie Stand By Me.
The scene had horrified me, little did I know how close to my reality it would become.
Trying not to slip across the tile and spread the stuff more than absolutely necessary,
I rush Riley to the shower.
Daddy has removed the wheelchair and all contents to the lanai.
Ronan has retired to a corner of the couch he hopes will not be reached by the shower Riley is causing, barricading himself behind the cushions and immersing himself in Ben 10: Ultimate Alien.
Soon, the floor is piled here and there with discarded clothes, burp cloths, towels, sheets and diapers.
The washing machine is again hard at work.  Daddy and Mommy run around in various states of undress.  Ben 10 gets a little louder.
The wheelchair is unrecognizable as each part that could be dismantled is strewn across the lanai.
The hose runs at full blast across the various pieces.
Somehow the stuffed frogs are spared.
 Riley’s medications refuse to stay down.  By 4:35 am we are all worn out but still hear his reaction to a muscle spasm triggering seizure #81.  No stopping it now without anti-seizure drugs in his system.
Diastat to the rescue.  Event ceases by 4:44 am.
Riley finishes this with a great big yawn,
as if to say “Oh, glad that’s over, I’m a little tired now.”
Daddy goes off to a full day of work after this eventful night.
No idea how he manages that.
Riley has the muscle tone of a wet blanket.
Cancel ESY and horseback riding at NEC.
Waiting by the door,
Ronan cannot wait to get to Vacation Bible School.
Wheelchair needs to be reassembled.
Another day in the Life of Riley.

Mommy Vs. Clonidine

Clonidine, a blessing and a curse for my family.  For now, I will keep this brief because first of all I am tired, and second, Riley is home.
It has been a very long week which began last weekend when Riley did not feel well and stayed up 48 hours straight.  Clearly, the clonidine does not always succeed at dropping his blood pressure and helping him to fall asleep.  When Riley is wakeful, the rest of us stay awake with him.  I did have a plan to post about that 48 hours.  I have not gotten to it… because I was up 48 hours straight with Riley, it can become an emotional subject because the toll sleep deprivation has taken on my family, and because each time I go through this… I really do not like myself very much and likely it all should not be shared.
Though, as you recall I have a mission and it is to share a little of what it means to live this special needs life.  Some should be kept and I am not writing a full-disclosure blog.  However, I may verge on subjects that could get me in hot water such as medication use etc.  I live on the edge just by circumstance alone.  Once you are special needs… you are open to judgment.
Alright, I must get through my post and attempt to wake Riley.
We were up a lot and I think of it as taking from “the bank of Riley” and it would appear “the bank of Mommy” too.  Tuesday Riley went into recovery mode and went into a very deep sleep at school.  Naturally they were concerned about this uncharacteristic behavior and asked me to collect him.  Unfortunately, Riley was at school in San Carlos about 15 miles north of home.  I happened to be 15 miles south of home in a doctors waiting room while my lucky mom was suffering through a colonoscopy.  “Please wait.”  That was hard as procedure dictates that uncharacteristic behavior gets him sent back to his family.  Shall we call Dad.  Dad is working and happens to be driving a tiny run-down Toyota Camry.  Riley and his chair need his special seat and space for a wheelchair as well.  Of course, I did not have that either as I had taken my mother’s car for this event.
In the end, I actually pressured the very lovely doctor Schwartz as soon as I could to please talk to me now so I could gather up my mom and run out the hospital doors.  Yep, great supportive daughter I am.  But Riley’s needs come first.  Always.  That is just how our life is.  Riley is first.  Always!  Rush doctor through my lecture, get mom out the door, race her home, race to my house and swap cars, race to Riley’s school.  Take him home, feed him and watch him wake up and be ready to take on the day.  Gee wonder where my time goes?
On to this morning.  I am still feeling sleep deprived.  You would think after all these years I could handle it but the reality is that over time I have just kept taking from my “bank” without opportunity to replace it.  First think I do each morning is prepare Riley’s morning drugs.  Morning drugs are on the red side of the pill organizer.  The RED side.  I know this.  First thing this morning… I prepared a little silicone bowl full of applesauce, opened up the blue side of the pill organizer and located Friday drugs, ground them in the mortar and served them with the applesauce to Riley.  Well done Mommy.  First order of the day taken care of.
Off Riley goes to school.  An hour later the phone rings.  Riley will not wake up, please come and get him.  Day over for Mommy.
Obviously I fit this post in anyway because he is still sleeping.  Hey, we all need some sleep and it’s gonna be a rough night since HE ALREADY HAD HIS CLONIDINE!

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We are all special… today I’m extra special… Stacie Wiesenbaugh

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