As the parent of a child with special needs, I’ve learned a great deal about how hospitals work, what gets a care team concerned and the things to monitor closely during a hospital admission.
But each hospital admission comes with unique circumstances and situations that provide learning opportunities for both parents and caregivers. I’ve learned a lot from this hospital stay when it comes to the admission process, patient placement and safety when it comes to IV lines.
J.P. came into the hospital by ambulance on the Monday before Thanksgiving. He was vomiting and unable to maintain his oxygen level. We knew he would be admitted, but he was placed on the pediatric unit instead of pediatric intensive care. The pediatric ICU staff is well aware of his condition and has cared for him on many occasions.
Parents who find themselves in a similar situation should reach out to the doctor who made the decision to admit the patient. Let them know of the concerns and speak up about the reasons for them. Be prepared to discuss the patient’s medical background and any facts that would warrant the reasons for the change.
In J.P.’s situation, his oxygen saturation level can drop suddenly, which has led to intubation twice now within the past year — once as J.P. was being taken to the pediatric unit.
I also learned a big lesson in IV safety during this admission. J.P. had an IV in his foot that infiltrated and led to serious swelling. The problem came because he also had an allergy bracelet on his ankle. The swelling turned the bracelet into a tourniquet of sorts. The problem was found within enough time to prevent any serious consequences but taught me a few tips that need to be shared.
The most important thing is to watch IV lines closely and take note if the patient seems to be in pain. Avoid putting any ID or allergy bands on an appendage with an IV. A nurse can easily move them. In our case, J.P. had an allergy band on his foot and his hand. There’s really no need for two of them. Finally, ask questions about the medications being given through the IV. Some can be more damaging to veins than others.
We were dealing with some new doctors during this admission who weren’t aware of all of J.P.’s nuances. Be sure to provide contact information for your child’s primary care physician or any other doctor at the hospital who can provide background to those providing care in the emergency department or hospital unit.
Also, always carry a sheet of key information about your child. Ours includes J.P.’s diagnoses, contact information for doctors, previous surgeries, settings for his shunt and vagal nerve stimulator and medications. The medications include doses and strengths. If you use liquids be sure to include the amount of milligrams per milliliter.
All of this information can make things go much smoother in an emergency situation where you may not be thinking clearly.
We’ve been very lucky to have a care team that’s committed to J.P.’s well-being. Reach out to hospital leadership — a charge nurse or case manager — if you feel you’re not getting the care your child needs. Hospitals also have rapid response teams as a last resort.
We spoke up to several members of hospital leadership and were able to schedule a family meeting with most of J.P.’s doctors and nurses. The meeting allowed us to come up with a care plan for future hospital stays. It really makes a difference when everyone gets together for a meaningful discussion.
When you have a child with special needs, your hospital care team becomes family, and that’s exactly what’s needed in troubling times.
It’s been a while since I ran my first marathon on Jan. 10 at Walt Disney World, but I still think about it often for many reasons.
I’ve never been a sports enthusiast, but as I have aged I realized simply that if I wanted to eat all the yummy foods I enjoy, I needed some way to burn those calories.
Running was simply the easiest way to do that, and I felt it wouldn’t take much planning to lace up the sneakers and walk out the door.
I first began my training to run in the race hosted by WESH-TV news anchorman Jim Payne. I realized there’s also a group of employees at WESH that run in many of the Track Shack races throughout the year.
After running Payne’s 5K, I decided to try a 10K, and then a half marathon.
Even after the half marathon, it was a big step to take on a full marathon, but my interest was piqued.
I began looking at training programs, and they seemed do-able, so I just started one and knew that if I was going to complete the marathon, it would be at Disney.
I signed up, and the only thing left was crossing the finish line.
I ran the Disney Marathon and my time was 5:16:16. I had hoped to keep it under five hours, but there will be more races in the future.
I learned a lot during my training and race that I feel can be incorporated into the way I view my job.
The biggest lesson learned has to be that almost everything is achievable if you just break it down into small steps. I never believed I would run a marathon, and even as I stood at the starting line, there was a bit of doubt about if I would make it to the finish. But by breaking the training down into 16 weeks of training runs, it all worked out, and I felt pretty good throughout the race.
When faced with tasks that seem daunting, I’ll always look at how the job can be broken down to achieve the desired product.
During the training, I ended up hurting my back in early November. That resulted in me having to put my training on a brief hold and make some visits to the chiropractor — and I even tried acupuncture.
I was worried that I wouldn’t be able to get back on track and get enough miles logged before race day.
At one point, I just had to learn to trust that I had been running for a long time and needed to have faith in my abilities. It’s another thing to remember on those days when work is coming in fast and furious and it seems like you can’t catch up.
Running isn’t for everyone, but I believe there is some type of physical activity out there for all of us. While it may seem like hard work, the payoff is better health, better sleep and better attitude.
Exercise is important — even for our family members with four legs.
In the beginning of April, I made a decision to stop walking the dog and running by myself. I decided to teach the dog to run with me, so I could get everything done at once.
This wasn’t purely a selfish move. Karina’s weight was creeping up, and I know how important it is for a service dog to maintain a healthy weight.
At our team training at Canine Companions for Independence, Karina weighed 44 pounds. She has put on about five pounds while with us, and I didn’t want it to get out of control.
It was on a whim that I decided it was time for a change, but I knew I couldn’t just expect her to run any amount of distance off the bat.
We generally walk around our subdivision, which is just over a mile’s worth of sidewalks.
We began running parts of that mile, and over a few weeks we got to the point of running the entire time. I then began taking her with me on a bigger loop of about 2.5 miles, and we were quickly able to ramp up to running the entire time. It wasn’t hard to get her from there to 5K or 3.1 miles.
I recently posted on the blog about our new cat, Duncan. During a visit to the vet’s office with Duncan, I took a few minutes to talk to the doctor about running with a dog and got some valuable advice.
Luckily, the vet is also a runner. He said to always be mindful of the temperature. Try to run with a dog in the early morning or late evening. Any temperature more than about 85 degrees will require precautions, such as bringing water or taking breaks.
Some cues to watch for from the dog include not wanting to run, sitting down during a run or appearing lethargic, weak or showing excessive panting.
Also, make sure to give the dog time to warm up. Start off slow and gradually increase your pace. Karina is currently running at a 12 to 13 minute per mile pace. The vet told me I should be able to get that down to a 10 to 12 minute pace.
Before running with a dog, it’s important to discuss it with a veterinarian. The breed of dog and age can make a difference.
I think our running outings have helped us to strengthen the bond between us. I swear Karina always seems to have a bit of a grin on her face when we cross the finish line.
If you’ve run with your dog, please share your thoughts and tips below. Thank you!
My wife, Paige, meets her new cat, Duncan, on her birthday eve.
There are plenty of reasons why bringing another cat into our home wasn’t exactly a good idea, and I’ve said all of them to my wife, Paige, over the past few months.
The biggest reason has always been the battle to keep our Canine Companion, Karina, from getting into the cat’s food — as well as the cat’s litter box.
Anyone who has read this blog knows we had two cats who were sisters for about 20 years. Ariel and Belle were gifts that I gave Paige on her birthday just after we were married.
They were great cats and brought us lots of smiles and laughs for many years. Yes, they were furry, but I think we considered them our first kids.
They played, chased each other, leaped to the top of the kitchen cabinets and even played catch with those cardboard-type coasters you get at restaurants.
We got Karina as their lives were winding down, and while the vet wanted us to always keep food available for them, it was difficult to keep the dog out of the food.
The frustrations began.
Once Ariel was gone, I was ready to be done with cats — and especially the litter box.
But the house felt strange without a cat, and Paige constantly said she wanted another one.
Through the miracle of social media, I learned that a former news director at my station, John Harris, had found a cat on his farm.
After numerous Facebook messages and emails, it was decided that the cat would be Paige’s next birthday present, but getting it here proved to be a challenge.
It’s not easy to fly a cat on a plane. It’s a lot more difficult than shipping a package. There are vet certifications, vaccinations, kennel specifications and plenty of paperwork.
I deeply thank John for all his assistance to get the cat, which I named Duncan, to Florida.
Duncan is the coolest cat ever and quickly found his way into the hearts of my family.
Even after his plane flight, he wasn’t frazzled. He was chilling in his kennel like it was no big thing.
I took Duncan to the groomer upon arrival. (I really didn’t want him bringing fleas into the house.) The groomer was amazed at how calm he was.
Paige was totally surprised when I took her with me to the groomer to pick up the cat. There’s video of her meeting him.
I also found the highly-rated ModKat litter box on Amazon to help keep Karina from getting to Duncan’s prizes. He also eats his food pretty quickly, so there’s nothing left for Karina to ingest.
Things have really gone well, and I actually look forward to playing with him whenever possible.
When I told J.P. that we were getting another cat, he got a big grin on his face and has enjoyed seeing him and cuddling with him at night.
So what happened? Why did I make the decision to get the cat? I’m sure there are factors I don’t even recognize. Like Paige, I’ve had cats around my whole life. I found ways to keep the frustrations at a minimum, and Duncan looks a lot like Belle.
My sister-in-law says I lost my mind, but at least I have a smile on my face.
I wondered for a long time if I would get a tattoo.
My opinion is that a tattoo should have a very special meaning. I know it’s something you’ll spend the rest of your life with, so I asked myself what in life has changed me the most?
Two things came to mind: The birth of my son and the battle with breast cancer that my wife, Paige, experienced.
When I reached that conclusion, I knew exactly what I wanted for a tattoo: a breast cancer ribbon.
I haven’t battled breast cancer myself, and for that I’m very thankful, but I lived the experience of breast cancer through Paige.
For several years I wanted to get the tattoo in time for breast cancer awareness month in October, but there were still many questions.
I didn’t want to just walk into any tattoo shop, so I needed to find one that was reputable and had good reviews. Luckily, I know a few people who have tattoos and found the right place.
The second question was where to put the tattoo. For me, it’s personal. I want to be in control of who sees it and when. It’s not something I just want out there all the time.
I also think foot tattoos are really cool. Don’t ask me why, but they just strike me.
Since I work in a professional environment, it again leaves me in control and won’t cause problems with appearance policies, etc.
So I knew what I wanted, I knew where to get it, and I knew where I wanted it placed. There was just one more question: I wanted to include my son, J.P., in the tattoo.
That was an easy fix.
For those who don’t regularly follow my blog, J.P. was diagnosed with holoprosencephaly at birth. There’s plenty of information about it in other entries here at NavigatingLifesDetours.com. The abbreviation for his diagnosis is HPE.
Parents of kids with the diagnosis have added the letter “o” and refer to it as HoPE. That’s also the name of the support group for people with holoprosencephaly.
Paige also surrounded herself with hope during her breast cancer battle, so including the word hope in my tattoo had double meaning.
A busy schedule, my training for the Disney marathon and trying to get it scheduled just took longer than expected, so it wasn’t done in time for breast cancer awareness month this year.
But my schedule opened up this week because of some back pain that prevented me from running and we also had a last-minute cancellation that freed up our date night.
I’m glad Paige was there when I got the tattoo. It made it even more special. Plus,I learned this in my research that the most painful tattoos are those on the foot, and I can now say it’s absolutely true.
I managed the pain, but I told Paige it felt like being stung by a bee over and over again and not being able to do anything about it. I think at times it was more like being stung by a wasp or a yellow jacket.
When I told the tattoo artist that I wanted it placed on the back of my foot, his response was, “That’s going to feel nice.”
I was very happy with Hurt’s So Good Tattoos in Altamonte Springs and would recommend Mean Mike as a tattoo artist. He worked with me on placement and design, and thankfully, it only took about 10 minutes to complete the actual work.
So, that’s my tattoo story. Would I get another? Not sure. It would have to be something life-changing. Completing my marathon? Hmmm.
The balance between work and fatherhood has always been difficult.
J.P. is a growing boy — a teenager now — and it’s taking more hands to do the most basic things.
As I’ve published in previous posts, we’re getting help through nursing and a new ceiling lift system, but we’re limited to certain times with nursing, and the shifts aren’t always filled.
The lift can get J.P. from bed to couch, but that doesn’t help with baths and diaper changes.
In addition to work and fatherhood, I’m still chairman of the Family Advisory Council at Florida Hospital for Children, and I’m training for the Disney Marathon in January.
There have been some unusual additions to the calendar late this month that simply brought things to a boiling point and prompted a discussion about priorities.
Let me say, unequivocally, that there is nothing more important than my family. I’m a Christian, and I believe that next to my relationship with God, my wife is the most important person in my life. My relationship with her is followed by my relationship with J.P.
To be brutally honest, I feel like I frequently put Paige and J.P. above my relationship with God — not purposely — but it just seems to happen that way.
The struggle comes with things like work and personal time. I accepted a promotion at Hearst Television that has put me in a managerial role, which means I have additional responsibilities and last-minute schedule changes.
My paycheck is the only one the family gets — and that also provides the insurance for the family — so I really do need to do a good job and concentrate on my career.
Several years ago, I was given the opportunity to join the Family Advisory Council for Florida Hospital for Children. The council assists the hospital in its journey to provide family-centered care. We examine policies and sit on hospital committees so the hospital staff can see things from the perspective of the patient and their parents.
As chairman, I spend more time with the staff, working to grow the relationship between the hospital and the council. It provides me with the chance to give back for the excellent care we receive during J.P.’s hospital stays.
I believe we all have strengths and weaknesses: My wife is a caregiver. She reads J.P. books, plays with him and coordinates his schedule. I bring home the paycheck, pay the bills, help with housework and help to make the outside world a more accommodating place for J.P. and the kids like him.
When I’m home, I do my best to spend time with J.P., but it’s not my top priority to sit down and read a book to him. However, I usually do his baths, brush his teeth and keep his nails trimmed. Before his bedtime, I also like to snuggle with him in the recliner. It seems like our time.
But is it enough?
Running has become my time to unwind and de-stress. It was the only way I could find to get exercise to stay healthy. I never know when I’m going to be able to do it, so all I have to do is lace up the sneakers, stretch and head out the door. I’ve lost a lot of weight and brought down my blood pressure.
So what is the priority? Some say I’m very black and white and need to see the gray in the world. But fatherhood and my marriage aren’t things I take lightly.
I also wonder what J.P. would say if he could communicate like a typical child. Have I disappointed him? Does he understand the importance of the things I do? Does it matter?
Will I regret my choices later in life?
They’re all questions to which I’m trying to find the answers — and the balance — before it’s too late.
It’s been a busy year, and I’m having a hard time believing it’s already nearing its end.
I like to think I thrive in a busy environment, but recently, I’ve frequently felt like I’m struggling just to get the absolutely essential things done.
J.P. is growing, and I’ve finally reached my breaking point — at least my back has. I just can’t grab J.P. and move him around like I’ve done for the past 13 years. Of course, Paige came to terms with that a while ago.
I tell people we’re a victim of our own success, and luckily, our health insurance has covered additional help through PSA Healthcare.
It wasn’t an easy decision. But when I need to work, and Paige stays home with J.P., there just wasn’t enough people around to do the lifting required for dressing, diaper changes, therapy, school, etc.
We worried about having another person in our home. Would we get along with them? Would they treat J.P. well? Would they be honest?
We’ve probably worked with about 10 nurses now, and there was only one that caused problems.
Moreover, the nurses have come to enjoy J.P. and his antics almost as much as we do, and he seems to consider them his buddies.
Things have gone so well that Paige and I decided to add nursing on one of the nights I’m off so that we can actually have a date night. It has become the highlight of the week for me, and I think Paige also looks forward to the chance to get away and be adults.
It provides the chance to just let go and have fun, which is something that seems to be in short supply at times.
In June, I received a promotion at work that has me managing the team of editors who watches the Hearst Television station websites on nights and weekends.
While I enjoy my job, the first few months were quite busy trying to get a grasp on things, talk with all of the stations and determine where the relationship between the Hub team and the local stations stood.
On top of that, I quickly had to work on hiring two editors to complete the team and make needed changes to how the regions of the country are divided.
Plus, I’m midway through my second term as chairman of the Family Advisory Council at Florida Hospital for Children — as well as a member of the hospital’s Patient Safety and Quality Committee.
Hence the lack of blog posts lately, but I’m really hoping to change that. There’s something therapeutic about getting all of this written out.
At a time when many are questioning the value of the health insurance they have or need to get, I believe we’ve been lucky to have a policy through Hearst that has helped us to get the things needed to keep J.P. healthy and happy — all while not driving the busy parents off the deep end.
It was more than a 13th birthday party at J.P.’s house over the weekend.
I’m not saying that the very fact that J.P. turned 13 wasn’t reason enough to celebrate, but this party felt different than some others.
We began the week at Florida Hospital for Children for a 48-hour EEG study, and that’s when we began to wonder if we would even be home in time for the party.
J.P. has had some times this year when he appears to be very uncomfortable — almost like he’s going to explode. We first believed it was gastrointestinal in nature, but we later learned it was neurological, actually a seizure.
He has seemed over the past few months to have more of these episodes, and it was becoming an almost daily occurrence. That’s when we decided we needed to do something about it.
There were other symptoms that went along with it, including an unexplained increase in weight.
J.P.’s neurologist ended up pulling the trigger and ordering the EEG, and on this admission, we found out the exploding thing didn’t correlate with a seizure. We ended up trying a stronger reflux medication to see if that would help.
We’ll follow up with the neurologist this week for a further review of his symptoms and talk more in-depth about what to do next.
Anyway, the party on J.P.’s birthday was, of course, special. I still recall the doctors cautioning us that he probably would never see his teenage years. While we always seem to be dealing with something when it comes to his health, his first 13 years have gone pretty well.
I was telling someone earlier this week that among my biggest fears when thinking about having a special-needs child was that many I’ve seen always seem to be unhappy or unaware of what’s happening around them. J.P. is anything but that.
I believe J.P. would tell us that his life is a joy, and he’s always aware of what’s going on around him and trying to engage the people he sees.
He has opened my eyes to many things, especially that those who have differing needs than us typical folk are there and likely know more than we give them credit for.
It’s something to think about moving forward as we continue to try to do our best to keep that smile on my little teenager’s face.
Ariel has gone to be with Belle in cat heaven.
For those who aren’t aware, Ariel and Belle were my first birthday present to Paige after we got married in 1994.
They were sisters and came from the home of a fellow WESH-TV employee when I was producing the morning newscast in Daytona Beach.
I went to pick out a cat for Paige, but there were just two left, and I didn’t want to leave one of them alone.
The cats were put in a wicker basket for the drive back to our Lake Mary apartment, and I remember before we got too far down the road, Ariel had managed to get a paw through the basket in an attempt to escape.
Ariel was a very smart cat. She could open cabinets, loved to catch those cardboard coasters you get from restaurants and had boundless energy in her early years. She could sprint across a room in no time flat, jump on a counter and be on top of a kitchen cabinet in an instant.
She was also a confidant during the uncertain times after Paige became pregnant with J.P. and was there when our boy was born and we weren’t sure what to do next.
For many years, after J.P. was in bed, Ariel would be waiting on our bed ready to be petted before it was lights out. That continued until her final day.
She’ll be sorely missed. I don’t think we’ve yet gotten over Belle’s passing seven months ago.
Paige told me yesterday that it’s the first time she hasn’t had a cat in 38 years. Amazing.
With Karina’s arrival, I doubt we’ll be replacing our favorite felines in the near future. I don’t think they’re really replaceable anyway.
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