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Emergency Preparedness – Hurricanes

Emergency Preparedness – Hurricanes

Hurricane season is officially here with the arrival of Hurricane Hermine last night in Florida. I realized as I lay in bed trying to go to sleep that I had yet to do a post about the challenges unique to Hurricanes. I published a similar post about snow last winter if you’d like to check it out. Hurricanes, however, are a different beast. The challenges commonly presented include:

  1. Power outages
  2. High winds and structural damage
  3. Flooding

The number one thing to remember with a medically complex child or even an adult that needs assistance is to evacuate the moment you’re asked to do so. If you’re new to living in an area visited by Hurricanes, these are not just rough storms. They destroy large swaths of property. There will not be power, and you’re unlikely to have fresh water. If you insist on staying after the evacuation order you are taking your life and the life of your charge into your own hands.

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Crazy Week – A Rough Fall

Crazy Week – A Rough Fall

Not sure how many people know this. I certainly had no idea before this past week. Noonan’s Syndrome carries a decently high probability of having a bleeding disorder of some kind or another. Having a bleeding disorder can mean a lot of different things. Sometimes the bleeding is slow to stop. Sometimes the wound re-opens easily for multiple different reasons. I didn’t know any of this until our son took a spill face first onto the hardwood floor from standing height. He falls a lot but this one was different. A blood vessel in his head burst on contact.

Instantly he had a golf ball sized lump on his head. I wasn’t sure how serious that was so I was dialing the pediatrician when it gradually doubled in size before my eyes. Suddenly, I didn’t feel so comfortable waiting on hold. I called our emergency number and waited for the medics to arrive. When they came in the lump was about 90% of the size it would eventually become. They advised I take him in as a precaution so we grabbed my purse, both of our shoes, and loaded him into the ambulance.

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Emergency Preparedness – Snow

Depending where you live, you’re going to see a lot of snow this weekend. It’s coming down heavy. There will be high winds and low enough temperatures to ensure the roads will be impassable for some time. There are standard rules of thumb to follow. Have batteries, a radio which takes them, enough food, and a gallon of water per person per day. Typical preparation is for three days. We have our kids to think about, though, and they can require a little extra preparation.

Check your supplies. Make sure you have enough formula to last you through the weekend. Verify you have a spare of whatever might need replacing in the case of an emergency. Expect the power to go out. It’s probably too late to get a generator now, but if you need uninterrupted power for medical equipment, make plans with your admitting physician ahead of time to have a direct admission in the event of an outage. Don’t forget the gas for the generator.

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Medical Identification (Medical ID)

I highly recommend anyone with a child who has complex medical issues or special needs purchase a basic medical ID. There are a lot of different kinds available. There are adjustable ones with velcro and watch bands. For the fashion forward there are adorable combinations of pink and blue bracelets. You can choose to engrave the details on a plate. Some have a pocket where there’s a little piece of paper you write on. Whatever method you choose, children with special needs and complex medical issues NEED a Medical ID.

Why? You might be incapacitated by the same thing that injured your child or your child might not be with you. Then…

  1. Drug allergies will not be discovered until the drug is administered.
  2. If your child has an implanted device, such as a shunt, no one will know to check right away if it’s been damaged.
  3. They may offer your child who silently aspirates food or drink.

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From Chaos to Calm

From Chaos to Calm

It’s difficult to struggle through the chaos jumping from one thing to the next with no break between. Emergency after emergency barrels you over and there’s no way to tell for sure you’ll make it up for breath before the next wave comes crashing down, pushing you deeper underwater. You manage to survive the onslaught and suddenly everything goes quiet. You cringe waiting for the next wave to hit you and it doesn’t come. Instead, there’s nothing. The silence is deafening as you wash up on a perfectly calm beach which would theoretically be a wonderful place to be except the transition is so abrupt it’s jarring.

This is what happened after our son was diagnosed. Suddenly all the chaos went silent. In an effort to cope I’ve been cleaning the house non-stop and working continuously on our son’s occupational and physical therapy. I picked out decorations for the house and placed them appropriately. I’ve done some research into my next writing project. I’ve put in time at work. Today it finally hit home. There are no more emergencies. We may never rush off to the hospital emergency room again juggling calls from specialists and the pediatrician to determine if they want our son immediately admitted. From here on out our interactions with medical professionals are going to be routine. Straight forward. Normal.

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My Child is Sicker Than Yours

My Child is Sicker Than Yours

I ignore it as much as possible, but every once in a while I stumble across a conversation involving this awful competition. It goes something like this…

“My child has hypotonia…”
“Oh, so does mine! She also has a trach and a gtube”
“Well, he doesn’t just have hypotonia. We’ve been struggling with…”

The discussion continues. By the end, the entire world knows both children’s full medical history, even if they don’t know their first names. What on earth is the point?

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Managing Your Stress, Part Three: New Normal

Getting settled into a new routine after a emergency or crisis is one of the hardest things I’ve had to handle as a mother of a special needs child. One of the tricky things about not having a diagnosis is that you never know if you’re looking at a new illness (virus, infection, etc.) or a new feature of the undiagnosed syndrome. It’s happened several times that the new problem has turned out to be another clue to the underlying syndrome and we’ve had to adjust what we’re doing to accommodate. So, that’s all well and good, but how do you do that?

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Managing Your Stress, Part Two: Crisis

OK, so what do we do when we’re in a crisis situation? We need to have a plan ahead of time, because there isn’t any time for planning after the emergency begins. No one sits in the back of an ambulance, or in the ER thinking, “OK, lets make a crisis management plan!” First, we need a support person. Ideally this would be someone you trust completely and is competent enough in the basics of your child’s care to take care of them for an hour or two. At minimum, it can be a friend who would be willing to take the time to call you once a day, see how you’re doing, and remind you to eat. Ideally you would have a backup that’s probably closer to the latter than the former. It’s unlikely that your support person would become laid up at the same time your child is going through an emergency situation. Unfortunately, depending how many emergencies your child has on a regular basis it’s far from impossible.

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Managing Your Stress, Part One: Crisis vs. New Normal

This post is part of a three day series about how to handle stress when you’re bouncing back and forth between crisis and calm. I hope you find it helpful. I would love to hear about things YOU are doing to manage your stress.

There are two situations mothers of special needs children find themselves in more often than we would like to admit. The first is crisis situations. Many, although not all, of these land us in the hospital with our already struggling child. Once there, we fight fiercely to protect them from catching something even worse than what brought them in in the first place and engage in a constant power struggle with the hospital staff to let our children sleep. The second is what I call the, “new normal.” This frequently, though not always, comes after a crisis. Something has changed in our child’s condition and it’s changed the way that they and we have to live our lives. Identifying which of these two situations you’re in is key to properly handling your stress level.

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