Life in progress


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Random Update and a Thank You

First, thanks to everyone who participated in and commented on my One-Liner Wednesday and my SoCS. I’ve read all your wonderful comments, and I shall strive to reply to them all tomorrow.

Speaking of tomorrow, I’m going to get my MRI done on my noggin at 7am. I have to be at the hospital 45 minutes early, so that’ll be fun.

Wish me luck. 🙂

P.S. From the date the doctor ordered the MRI to the date of the test was almost exactly one month, for those wondering what the wait times are really like in Canada. Is that much longer than it would take in the US? Just wondering.


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Hopefully the final update on Alex, plus the 2019 Just Jot it January update!

Alex is home!

He’s still coughing, still having a bit of a tough time breathing, but his cardiac numbers were better and we decided home was a better place to be. So I’ll watch him closely for the next couple of days, and hopefully we’ll be all back to our normal chaos for his second week of Christmas vacation.

Just Jot it January 2019!

The first of January is tomorrow already!!

Normally, I’d have gathered up prompts by now from all of you, but with the mess this past weekend has been, it just wasn’t happening. So I’m going to do something different for the first week this year.

Tomorrow’s jot will be whatever you want to do with it, though I will post a prompt post just so you have something to ping back to. Wednesday the 2nd will be the regular one-liner, and on Thursday I’m thinking of doing something special. Maybe. We’ll see. Sometime before Sunday, though, I’ll post a request for prompts from you to get us through the rest of the month.

Stay tuned for the Just Jot it January rules post coming up right after this one.

Let’s do this thing!

Happy New Year, everyone!!


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Update on Alex

Before I go to bed, I want to leave a quick update.

First, thanks so much to everyone who left their prayers and positive wishes for us. It seems something got through.

I’ll back up a bit first, though. After I wrote my last post, my eldest son volunteered to go to the hospital for me and watch over his brother, so I did get a bit more sleep before I went.

Whilst there, I asked about Alex’s regular heart meds–I realized he was past due for them. The nurse said she thought she’d read that they were on hold … I told her he needed them every day, so she agreed to go and double check.

About five minutes later she came back with his heart meds. But. Her first question for me was, does he get fifteen mils or seven and a half mils?

The prescription is 15mg twice per day, and being liquid, it’s mixed as 2mg/ml, so he gets 7.5ml twice per day.

The doctor who’d written the order had it backwards. Had she not looked at the bottle and just read the doctor’s orders, she’d have overdosed him the medication that slows his heart rate by double.

Thank goodness for eagle-eyed nurses.

And again, thank you for your well-wishes. He might be out of the hospital tomorrow, or if not, Monday.

I left his signing dictionary at the hospital, so if they’re really stuck, they can look it up.

Oh, and he still hadn’t slept when I got there. He stood and looked out the window all afternoon–for about six hours–watching for me to arrive. When I left tonight, he’d been up for 38 hours aside from a one-hour nap. I hope he’s sleeping now.

 


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Communication – #AtoZ Challenge

My A to Z theme concerns the joys and challenges of being the hearing mother of my Deaf son, Alex.

When I discovered Alex was Deaf, I knew I would have to learn Sign Language. However, there was no point starting a formal education too early. I knew from experience that if you don’t use a language, you lose it pretty quickly. So in lieu of classes, I devised a few logical signs of my own. I think the first I ever taught him, before he came home from the hospital at the age of eight months, was to let him know when I was leaving and coming right back. I simply held my index finger up as I walked out the door. When I was leaving for the evening, I waved goodbye so he would know the difference. It didn’t take long before he needed to know why people were exiting his room; he began to cry whenever a nurse left, even for a moment. “Just a second” was the first of many I would have to teach the nursing staff over the years. I found the signs for “mom” and “dad,” and a few others so I could add to both my vocabulary and that of the people caring for him in the hospital when I couldn’t be there myself.

Even now, fifteen years later, it’s necessary to teach the nursing staff how to sign whenever he stays in the hospital. And not just one nurse, because signing is usually the last thing they have time to relate to each other when they change shifts. They normally have 15 minutes to go through the medical history and changes of all the patients on the floor. If Alex is admitted for a few days, there’s a fair bit of staff rotation. When a hospital is close to a border, such as the Ontario/Quebec border in Canada, the staff are expected to be bilingual, yet there is no provision for teaching hospital staff Sign Language. At the very least, it should be mandatory to have a reference book on every floor. I had to buy one of my own and lend it, always hoping it would come back home after Alex’s stay.

For a child without diverse medical needs, this would only be a problem occasionally. For us, it’s an ongoing concern. I honestly don’t understand why it’s not mandatory to teach Sign in schools. If you follow my A to Z, you may agree with me by the time the end of April gets here that they should.


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Advocating for Decent Health Care

As I waited in the Emergency Room with my elderly mother today, I listened to two strangers discussing the horrors of what they had heard routinely goes on in ERs across the country. And horrors they were.

One spoke of elderly patients dying in chairs and on gurneys whilst being ignored by overworked staff members; the other gave an account of a friend of a friend whose nine year old daughter died after not being properly treated. As the story went, two doctors of opposing opinions argued over the proper care of the child. One believed the girl had pneumonia and wanted her on antibiotics but the other decided it was a mere cold. The latter of the two was also on the latter of two shifts and won out. The nine year old lasted two days before flesh-eating disease got her. The parents are still waiting for the lawsuit to be tied up a year later.

In all of these cases, the tragedy which resulted might have been avoided with the presence of a competent patient advocate. After a cursory search in my own area of the world, which is Ontario, Canada, I discovered that finding an outside advocate isn’t easy. (I did only a quick search because had I been looking for an advocate in the case of an emergency, it’s logical that that’s all I’d have time for.) I found that it’s possible to get one to accompany a patient to appointments, etc., but the advocate must be interviewed in advance and paid for – highly inadequate in the case of having to go to the hospital in an emergency, and inaccessible for someone with no money. In any case, most of us rely on family and friends to advocate for us, as was the case with the little girl.

I have no way of knowing what the parents’ knowledge of medicine was, nor what their levels of intelligence are, but I do know, as a parent, that most mothers know what their children are like when they’re healthy and how they act when they’re sick. Was the mother in tune with her daughter but unable to express her concerns to the doctor? Did the doctor simply choose not to listen? Again, I don’t know. What I do know is that it’s important for us to have at least a little understanding of what our loved ones are facing before we take the trip to the hospital in the first place. If that means going on the internet to search for the symptoms, so be it. At least we’ll know what questions to ask when faced with a busy doctor, and what to insist on as far as tests go.

I can’t help but think that these horrific events could have been prevented with the right amount of basic knowledge, advocacy, and attention to detail.

It’s scary to think that doctors don’t know what they’re doing. It’s frightening to know that our hospitals lack the funds to provide quality of care. But what is just as alarming is the fact that there’s no one to stick up for us, the patients, when we can’t or won’t stick up for ourselves.