Tag Archives: emergency

ER Tour

Riley’s school reading across my phone during the school day would normally put me on guard immediately. However, Riley’s bus could not even have reached the school yet.

“Hello, I am the Vice Principal of Riley’s School….”she started. “We have been trying to reach you.” You have?

Riding the Storm

Oh how I wish I could warn you mama…It’s coming, I can feel it, but I can’t control it; I try but it’s inevitable. I am about to enter into another “storm”.

Here I sit Yet Again with Kaety in the Hospital! by Christine

Christine, mom to Kaetlyn, wrote from a Naples hospital room this afternoon:

…it really makes me feel better to share our journey with others. We need to continue let each other know that we are not alone in this special life!… Today we are just letting her rest and regain her strength and such after this ordeal. The Dr cannot yet tell us when she can go home all we know for sure is that she will definitely be here through the night as it is standard protocol to remain hospitalized at least 24 hrs post extubation.

Wednesday Morning

My little cell phone sits beside me.  I am ready to take Riley’s next emergency.  I can handle them.  What bothers me is that Riley is on his own.  Will the person beside him during his moment of need comfort him?  Will he feel safe or will he be frightened.  Sending him off to school is a comfort for me.  He enjoys it, I can tell.  He returns smiling.  Yet, he is alone.  More alone than any of us can understand.

Below is an article found on www.sengifted.org.  As I consider the education of both my special needs child and typically developing child, I am reminded to watch that both are being prepared for their future while enjoying their childhood.  Their school education may be worlds apart but the goals are the same.

boating with Freedom Waters Foundation

September Back-To-School Suggestions
By Wenda Sheard

SENG’s vision is a world where gifted, talented, and creative individuals are supported to build gratifying, meaningful lives and contribute to the well-being of others.
How can parents best support their gifted, talented, and creative children at the beginning of the school year? I offer three suggestions.
Teach Children Philosophies of Education
I suggest that parents discuss with their children the purpose of education. Exposing young children to what great philosophers have thought about education not only teaches children history, philosophy, and education, but also helps them to create their own educational goals—goals that may differ significantly from the goals of other children.
When exploring what great philosophers have thought about education, children might notice three main purposes of education:

  1. Education serves the purpose of preparing children for adult life, including preparing them to support themselves as adults. Accordingly, the United States Department of Education’s stated mission is: “to promote student achievement and preparation for global competitiveness by fostering educational excellence and ensuring equal access.”
  2. Some philosophers emphasize that education should prepare children for good citizenship. Plato (circa 400 B.C.) and John Locke (1632-1704) advocated virtue and good citizenship as the aims of education. Plato wrote: “And we must remember further that we are speaking of the education, not of a trainer, or of the captain of a ship, but of a perfect citizen who knows how to rule and how to obey.” Locke wrote: “Learning must be had, but in the second place, as subservient only to greater qualities.”
  3. Education also serves the purpose of providing children with an enjoyable childhood worth living and remembering fondly. John Dewey (1859-1952) felt strongly that education should respect childhood: “[The best teachers] give the pupils something to do, not something to learn; and the doing is of such a nature as to demand thinking or the intentional noting of connections; learning naturally results.” Maria Montessori (1870-1952) similarly advocated happy childhoods: “Education is not something which the teacher does … it is a natural process which develops spontaneously in the human being.”

Once children understand the purposes of education, they have tools to articulate whether, and how, their own educations meet those purposes or might be tweaked to meet those purposes. Sometimes the only tweaking necessary is a change of perspective—perhaps a child will understand that even if school currently is not sufficiently rigorous in the “heading to adult life” sense. Perhaps the child can find ways to enjoy childhood until rigor appears or reappears. Or, better yet, perhaps the child can find ways to introduce rigor into his or her own education. Child-introduced rigor might include education that will lead to employment and/or good citizenship in future years. Some children spend time excelling in computer programming, gaining marketable skills at a young age. Other children spend time volunteering in ways that make a difference in the world, foster virtue in the child, and later impress college admissions officers and employers.
Explain the Necessity of Knowledge, Communion, and Expression
Another way that parents might support their gifted, talented, and creative children at the beginning of the school year is by reading P. Susan Jackson’s article “Bright Star – Black Sky: A Phenomenological Study of Depression as a Window into the Psyche of the Gifted Adolescent (see the end of this column for the online link). I recommend that parents read the article first before deciding whether, when, and how to share the article’s excellent insights with their children.
In the article, Jackson explains that gifted teens have an absolute need for knowledge of themselves and of physical and spiritual phenomena, for strong emotional or spiritual communion with others, and for expression of their emotions and feelings. Reading the article at the beginning of each school year might help parents and children (if sufficiently mature) to understand that beginning a school year is not a simple matter; each school year presents new opportunities and challenges for finding the knowledge, communion, and expression that Jackson found critical to the lives of gifted teens.
During the first weeks of the school year, parents and children can consider how the school year will affect all aspects of each child’s life. Will the child have sufficient opportunities for knowledge and for self-knowledge? Will the child have time at school or elsewhere to interact with true peers, not just age-mates? Will the child have time and methods to express emotions and feelings? Parents and children should consider finding non-school times to fill whatever gaps might exist in a given child’s school hours.
Offer Social and Emotional Hints
Most parents understand that the acquisition of knowledge is a small part of any school experience. Most teachers are keenly aware that the school day involves not just knowledge, but also social times and emotional events. In this last section, I offer three hints that parents might offer their gifted, talented, and creative children at the beginning of a new school year.
The first hint comes from Benjamin Franklin, who realized that by asking someone a favor, you endear yourself to that person. Counterintuitive, yes, but it works! I suggest that you and your child research what’s known as the Benjamin Franklin Effect. Your child might then decide to try out Franklin’s idea at school as a way to build friendship and respect.
Another friendship-building hint that I have shared over the years with new students is to look around the room and find students who look lonely. Then, with a smile on your face, go up to each of those children, ask them about themselves, and listen well. Smiling is a fantastic way to gain friends. Helping others who look lonely is an excellent way to exhibit and to build a generous spirit. Asking people about themselves and listening carefully to their answers is a social skill that even many adults could improve.
Sometimes a gifted, talented, and creative child will spend a school year without true peers in school. When this happens, parents can share yet another hint—encourage the child to approach the school year with the lens of an anthropologist.
Yes, that’s right—teach the child about the field of anthropology and engage the child in studying the culture of the school. Learning about anthropology and applying an anthropological lens, at the child’s level of understanding, to the school experience will help the gifted child learn about and reflect a great deal on people, social structures, and child development. Parents who spend the time necessary to guide their budding anthropologist will benefit from increased and honest communication that might lead to better understanding of the child’s school experience.
For more hints and suggestions, I recommend the book A Parent’s Guide to Gifted Children (Great Potential Press, 2007). That book, which is the core of the SENG Model Parenting Groups, well explains the nature and nurture of gifted, talented, and creative children.
If there is a SENG Model Parenting Group starting in your area, I highly recommend that you join the group. If no groups are currently available in your area, I recommend you consider being trained as a SENG facilitator. The next SENG Model Parenting Group Facilitator Training will be October 7-8, 2011, in Charlotte, North Carolina.
Wenda Sheard, J.D., Ph.D. is an emeritus board member and past president of SENG. She currently teaches near London, England, and serves as a trustee on the Council of Management of the UK’s National Association for Gifted Children.

Jackson, P. Susan, “Bright star — black sky: A phenomenological study of depression as a window into the psyche of the gifted adolescent,” Roeper Review. 1998 Feb 20(3) 215-221, available online at http://sengifted.org/articles_counseling/Jackson_BrightStarBlackSky.shtml

Seize the Day! Literally

5:00 am From his hospital bed I hear the familiar intake of breath as a muscle spasm begins.  Switching on the light I discover Riley in a clonic seizure.  Grabbing him up, talking to him, massaging his limbs; the seizure subsides in moments.  Four years ago, this episode could have lasted for hours.  Now with all the anti-seizure drugs he is often able to cease without intervention.

5:02 am On with the day.  After rearranging him repeatedly throughout the night, this meant falling back to sleep and oversleeping.  John and Ronan always rise by 5:40 am.  Oddly, they oversleep as well.  This is very strange. I cannot explain Ronan oversleeping.  John however has been working non-stop and just started trying Valerian Root Tea to help with his insomnia: it appears to actually work.

8:00 am Riley is off on the bus with a new assistant, Antonetta.  Assistant Liz had to cut back on her hours; we are very disappointed.  John and Ronan have already headed in their separate directions.

8:05 Plan for my day: dishes and laundry, desperately needed class at the gym, paperwork, sell some Arbonne, collect Riley from school by 2 pm, Integrity Biofeedback appointment for Riley and myself, pick up Ronan, oh – did I get Riley back into Dr. Stohler’s chiropractor routine, riding by 5 pm (we missed last week), is the shower set up for Riley, do I have everything Ronan will need for homework at the barn, are tomorrow’s appointments set up, is dinner planned for the late return…. then start it all over again.

8:35 am Phone call from Lee County Transportation.  Riley has suffered a seizure on board the bus and EMS is with him now.  Then EMS/Bonita Springs Fire-Rescue is on the phone.  I must sign in person for the bus to be released from the roadside.

8:40 am Heading somewhere in the vicinity of Old 41 and E. Terry.  How do I handle this now.  Seizure’s are part of our life.  Riley has quite a lot of drugs in his system to manage this disorder.  The last neurology appointment, I was instructed to administer Diastat after the next cluster seizure – this must qualify.  However, that window has come and gone.  Riley is ready to go on with his day.  Stimulation is better for him than coddling him.  Yet, Riley is a “hot potato.”  Everyone who gets him in their arms tosses him back to mom or dad as quickly as possible.  Do I just take him home to humor everyone else?  No thank you.  Riley needs to live a life.  I need to get a life.  On the way I talk to school’s nursing office: I love that office, let him have his day – what do ya’ll think the big green frog backpack hanging from the wheelchair full of Diastat  and medical and contact information is for! (no one touched it by the way)

9:00 am I have found them, bus, EMS, ambulance. Screeching the jeep into a tiny little used car lot, I am there.

Camera in hand.  Yes, I have my camera.  These are the moments to record as far as I am concerned and I have missed plenty of them.  EMS spies the crazy woman in ripped gym clothes, uncombed hair, red backpack purse and camera slung around the neck climbing aboard the bus.

I am greeted by a concerned driver, Louis… he spoke at least 20 words this morning, he must have been really nervous.  Welcome to bus 27126 Antonetta!  And then three rather serious EMS technicians.  Loosen up guys, perhaps you’ve encountered seizure disorders before.  Then of course Riley, still seated in his chair is smiling, laughing, and kicking – just like the last time I tracked down the bus and ambulance.  Good times.

9:10 am.
Sign some papers.
Kisses for Riley.
Big “Hi” for the little girl across the aisle tugging on my arm.  “Hi” again.  Yes, “Hi, Sweetheart.”
Merry waves from the boy ahead in the bus for the men in uniform.
Riley laughs.
Uniformed man stands up straighter and pulls in his chin.
Ambulance drives away.
More seriousness… more laughs.
On your way please school bus #27126.
Oh yeah, swing by the pharmacy for Leviteracetam.  Say yes to drugs.
Where was my day going?  Seize your day, Stace!

We’re gonna have our day, darn it!  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

Powered by WordPress | Rileys Smile