Tag Archives: fever

Reflections on Life’s Challenges – Kaet’s year in review

Our children go through this life facing things we would never have been able to imagine, yet they continue to grow and thrive defeating all odds. The longer they stay with us the more they teach us and allow us to grow with them. They are an inspiration even to the professionals that treat them.

As this year comes to a close I take this this moment to reflect on our experiences; some good, some bad; nonetheless all lessons in life.

Little battles

Riley and Ronan are seen here hanging out with Miss Southwest Florida 2012, Miss Caroline Kay Dixon, at Freedom Waters Foundation’sHeels & Reels last month.  Miss Dixon was very kind and sweet with my boys and was happy to don her crown again after a very full event for a photo.

One little battle after another.  This special needs life still feels like a war to me.  A never ending taking up of arms one moment and protecting my child the next.  This week they are just tiny little battles but I have become weary of heading out each day.

My Angel at 108 Degrees

As a mom of a special child I am resigning myself to the fact that there may be some things that occur to our children that are beyond the scope of knowledge of the medical profession. A very difficult “pill” to swallow as we want to believe that they can find the source and “fix” or prevent these things from happening…

As I write this, we are on day 6 of hospitalization from yet another fever episode. Kaet, without warning started showing signs of an “episode” and the school staff called 911 and then me. The school nurse describes the episodes as turning cyanotic and grey/clammy skin color along with respiratory distress. By now (as this is the 3rd time this year), we know that means the fever is coming; the nurse checked right away and got a reading of 99 degrees, shortly before EMS arrived she attempted another reading and it was just above 100 degrees; by the time EMS arrived at the ER, she had skyrocketed to 108.1 degrees!! – yes AGAIN, my baby girl’s body was “cooking”.

Appointments and Illness

There is so much I have planned for this blog and so much I want to say… However, there are a few problems getting in my way: primarily, time and energy.

On Monday Riley had his annual pediatric check up.  He did really well.  He is always so cooperative and pleasant.  This year, we opted to give him a flu shot.  Yes, it’s controversial.  However, caring for a sick child with multiple disabilities is one of the saddest and most difficult experiences a person may ever encounter.  Trust me on this.  I’ve done it and I don’t like putting Riley or any of the family through it if it can be helped.  A sick typically developing child may be challenging but it is nothing compared to going through it with special needs.

Our pediatrician is wonderful.  One thing we always cover is the well-being of Riley’s parents – yep, that’s John and I.  We ride an emotional roller coaster.  This is another on-going subject that I have been avoiding.  Admittedly, we are challenged by our role in life and being 9 years behind.  I do not actually care to delve into this today – in fact, I am unsure when I care to get into this.  For now, let’s leave it at the fact that being a Special Needs Family is not particularly easy.  The conversation went on that some do handle it and some do not – it seems to be some individual parents are stronger than others.  I object.  I believe that it is far more than simply can you handle special needs or not…

The special needs community frequently uses the phrase “a bullet is a bullet.”  Really, I do not think all bullets strike the same.  When your child can get him or herself to the table eat unaided, I do not believe the bullet did the same damage as all the others.  Fine, object with me.  This is my observation and this is how I feel. Perhaps all bullets are not created equally.

A few hours after a good report with Pediatrician, Riley came down with a flu.  As usual, joke is on us.  It has been a rough couple days.  Riding Monday evening had to be cut short as he began to whine as he was jostled around.  I happened to be side-walking with another girl in the class as I happened to be a little taller to be alongside her horse and the other available volunteer could reach Riley: my very first direct experience with any other special needs rider.  This was another surprise to me.  The rider also had multiple disabilities, and she was considerably older and large than Riley.  I had to mentally brace myself for the next half hour of hard work.  To my great surprise, she sat up herself and held her reigns.  I was simply there for safety.  No leaning on me.  No sneezing on me.  No pushing arms and elbows into place for proper weight-bearing.  This was unbelievably easy.  Could I possibly say to her family, “Wow, she’s easy to work with!”  Somehow, I doubt they would agree.  Could they possibly know that I found side-walking with their child to be a breeze?

Oh dear, that paragraph got all sidetracked!  Where was I going with that?  Riley was sick.  And was he sick.  I was replaced as a side-walker to remove Riley from the ring.  Gathered up my people: my Mom, Ronan and neighbor Annie who now volunteers helping to groom and tack while earning her high school community service hours.  Then on home we went.  Riley and I were up and down throughout the night to keep his fever under control and attempt to stop the incredible leg tremors – oh, I know I’ve talked about tremors here and there in this blog – I better tag them because they’re important.  When we weren’t under the fan we were in my bed, my arms wrapped around him reaching on each side to pull up on the toes of both feet in an attempt to calm the tremors, but unfortunately adding my heat to his in the process.  Any wonder why some parents keep their special needs children apart from the rest of us… illness is truly horrible and this wasn’t even a particularly bad event.

A rare event: Riley napping, and alone in his bed yet.
This has happened perhaps five times at the most in his lifetime.

Couple of posts to share today…
A post on respite for families – it’s a lifesaver, I promise: Respite: An Interval of Rest by Special Needs Ministry.
To my great relief I am not the only parent deserving of the title – Mother’s from Hell.

There was more to say, but my time is up.  At 3:30 pm my day is done as the end of the school day has arrived.  Well, I hope there aren’t too many typo’s and such, because this is a blog and I’m moving on with my day.

We are all special… I think… though I complain and want to compare bullets with you… by Stacie Wiesenbaugh

Raising RSV Awareness

Riley and I had the pleasure of being interviewed yesterday by Stacey Deffenbaugh!  Stacey anchors NBC-2 News at Noon and The Healthcast report at 5:30pm.  She also contributes court stories from state and federal court.
We discussed raising awareness of Respiratory syncytial (sin-SISH-uhl) virus, or RSV.
Ms. Deffenbaugh and her cameraman, John, were a pleasure to have in our home and share Riley’s story as well as his cause of protecting vulnerable children against respiratory illness.  Fortunately, Ms. Deffenbaugh was incredibly patient with my random thought pattern and our slightly chaotic lifestyle.  This experience certainly shows me that I need to polish my speaking skills and reign in my focus.  I suspect however that she will have no problem working around us as she prepares to get the word out.
Respiratorysyncytial virus (RSV) infection, is a common, easily spread virus that almost all children catch at least once by the time they turn 2.
RSV disease usually causes moderate-to-severe cold symptoms.  However, for some babies, complications from RSV disease can lead to serious lung infection.
Babies at most risk for developing severe RSV disease are premature babies – those born before 36 weeks gestation.
Premature babies have underdeveloped lungs and fewer of the vital antibodies needed to stave off infections, so they are not so well-equipped to fight RSV as full-term babies.  Other risk factors for RSV include: low-birth weight (under 5.5 pounds), certain lung and heart diseases, and situational risk factors such as attending day care, having preschool or school-age siblings, or exposure to tobacco smoke.
It is recommended that you call your baby’s doctor if your baby has any of these problems:
Coughing or wheezing that doesn’t stop
Fast wheezing or gasping for breath
Spread out nostrils and/or caved in chest when trying to breathe
A bluish color around the mouth or fingernails
A fever (in infants under 3 months of age, a fever greater than 100.4 degrees rectal)
    • Cover coughs and sneezes
    • Wash hands frequently and correctly with soap and water for 15–20 seconds
    • Avoid sharing their cups with others
    • Refrain from kissing others 

Parents urged to watch for common virus – cape-coral-daily-breeze.com | News, sports, community info. – Cape Coral Daily Breeze

Parents urged to watch for common virus – cape-coral-daily-breeze.com | News, sports, community info. – Cape Coral Daily Breeze

‘RSV’ can severely sicken young kids

August 27, 2011
By MEGHAN McCOY (mmccoy@breezenewspapers.com) , Cape Coral Daily BreezeWe interviewed yesterday with the lovely Ms. McCoy to help spread awareness of Respiratory Syncytial Virus.

Although babies who are born before 36 weeks are at high risk of catching the respiratory syncytial virus, young children up to the age of four are also at risk.
Every year RSV affects between 4 million and 5 million children who are younger than 4 years old. In addition, more than 125,000 children are hospitalized every year from RSV.
Pediatrician with Lee Physician Group Tom Schiller, MD, said that RSV is a very common virus that has been around forever. Although the virus affects people of all ages, it can make young children extremely sick, he said.
The symptoms for RSV usually include a nasty head or chest cold, fever, runny nose, cough and wheezing, which are much like cold symptoms. Worst case scenario, RSV can cause lung disease, heart disease and cause a baby to stop breathing.
“It is a nasty little virus,” Schiller said.
If a child is cranky, pulling at their ears or running a significant fever, Schiller said they need to be seen by a doctor.
Once the virus affects the child, it can occur over and over again.
“First time you get it is usually the worst,” he said.
Schiller said after a child attracts the virus, they may wheeze with their next cold without it actually being RSV.
“It could happen for a couple of months,” he said.
The symptoms can peak in small children between the ages of 2 to 8 months old. It can especially affect premature babies.
When the virus affects really small children, it goes down deep into their windpipes and causes inflammation and destruction, causing them to wheeze, Schiller said.
“Half of the kids that get RSV are later diagnosed with asthma,” he said, adding that it can happen at any point.
RSV, he added, is the leading cause of lower respiratory tract infection in infants and young children.
The virus usually comes in outbreaks during the winter months, according to Schiller.
Although a sample can be taken from a young child’s nose to run tests to see if he or she has the RSV virus, Schiller said they generally cannot act on the diagnosis.
A preventive medicine – synagis – can be given to the child to increase their immune system to help protect them against RSV. Schiller said the medicine is very expensive because it is a monthly inter muscular injection. Although it is expensive, it is cheaper than having a child go into the hospital, he said.
Schiller said the last vaccine that was created for RSV was in the 60s, but was later banned because it killed people, rather than helped them. He said research is still being done to create another vaccine to help with the virus.
With 80 percent of children in day care settings, the virus is easily spread through the simple touch of a hand.
“Hand hygiene is really the only tool you have to prevent it,” he said about the virus.
RSV became a strong concern for Stacie Wiesenbaugh and her husband John Buck when their son was born early and was faced with many complications.
Wiesenbaugh had a very healthy pregnancy until she entered her 32nd week and had to have an emergency Caesarean section on Aug. 28, 2002 because her son Riley had suffered an in utero grade four massive brain hemorrhage.
Riley was born four pounds, six ounces.
“He had many complications due to the hemorrhage,” Wiesenbaugh said. “We actually didn’t think he was going to survive the first night.”
A few days after Riley was born, he had to undergo surgery so a reservoir, a piece of hardware, could be placed into his skull so the doctor could remove the excess blood from occuring.
“The hemorrhage wouldn’t stop,” Wiesenbaugh said, which could have been deadly because when blood is not contained, it can cause extra pressure.
Due to Riley’s size the problem continued, which involved another surgery to place another piece of hardware into his brain. The VP shunt, Wiesenbaugh said, was designed to allow the body to take care of the access fluid by itself.
Riley was released from the hospital two months after he was born, which was close to his actual due date.
Because of his condition, the family had to take every precaution they could to keep him healthy, which led to discussions of RSV.
She said they had to protect his compromised lungs, which were already receiving help from a respirator.
“He was high risk for picking up this virus,” Wiesenbaugh said. “This kind of infection would land him back in the hospital easily and be life-threatening as well.”
The hospital in Los Angeles told the family about the synagis injections to help prevent the possibility of Riley attracting RSV.
Once a month for two years Riley received the injection, which kept him safe from catching the virus.
“It was worth it because we didn’t want to end up in the hospital,” she said.
Although Riley will be 9 years old on Sunday, the family still practices prevention measures to keep the virus away. She said they kept him home when he was in a compromised state and did not allow people to approach and touch him. In addition, when they were at home, they were not shy about asking people to wash their hands before holding or touching Riley.
“Even though he is beyond the age of 2, we still are very careful,” Wiesenbaugh said.
When she can educate others about the common virus she does by instructing them to wash their hands on a regular basis and sneeze and cough into the inside of their elbow so germs are not spread.
“It has been a long ride,” she said. “This birth changed everything about our lives.”
The parents were blessed with another son, Ronan, who is healthy and full of energy.
Wiesenbaugh said the progress Riley has made since he was born is amazing. He attends Rayma C. Page Elementary School as a fourth grader, where they began a special needs class for him, which has grown with other students since its inception.
“He comes home happy and they do everything they can for him,” she said.
Due to many of his systems being compressed at an early age, Wiesenbaugh said Riley is nonverbal, developmental, visually and hearing impaired. He does not communicate through spoken word or sign language.
“The way that he will squeeze your hand will tell you if he is relaxed or stressed. Since he cannot walk or jump with joy, he will kick his legs rapidly in the wheelchair if he is excited,” Buck said. “The pitch of his laugh can tell you if he is happy, scared or even in pain. If his sound (nonverbal) mimics yours in beat, pitch or tone he is in a communicative mood. In sum, it is his own language that we had to learn and we mutually learn given his impairments.”


Day Number Four

This is a reminder of the reason I blog.  This blog is not about bemoaning our situation.  It is intended to give those just on the outside of a special needs family a glimpse inside.  Hopefully, I may help give a little insight into what may be behind all that frustration, hopelessness and the closed door that they may be encountering with another special needs family.
Today it is time for Riley to return to school.  He recovers from illness so much faster than he used to, but it is still quite challenging.   He is not 100% and I am certain to hear in his report for the day that he was sleepy, snotty, coughed and was not himself.  He is being himself, just the self that is mostly reserved for home.
Today he needs to get back to activity and stimulation that I cannot provide.  Also, I need a few hours without him in my arms.  My left forearm aches from the weight of him.  I feel the rounding of my spine from hugging him to me.  A few hours rest before launching into the weekend with Riley will help it be a much more pleasant weekend for all of us.  Errands without Riley would be helpful as well.  None of this happened.  Received a call from school before 10 am while on the way to run errands; he’s running a fever and must go home.  Thankfully, Jamie and Alberto at the school are willing to load the wheelchair with good spirit each time I arrive without the ramp which allows me to handle it myself.  I am very grateful that they will take the time and energy and always with kindness and gentleness.  Riley has returned home and is resting a moment… not very quietly though, lol.  But then, he wouldn’t be Riley if it was quietly.  Even when he’s ill… he is still the sweetest child imaginable.
Still need to get in the laundry for those sheets of Riley’s.  Not one set today but two.  We have the hardest working washing machine to be found outside of a laundromat.
 Riley art work from ESE class above.

Thank you to those in our daily lives willing to spend a few moment on my blog.  It means a lot to me.  Today I am grateful to Maria at the pharmacy for the time to see what it is all about here at Riley’s Smile!  Thank you Maria.

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