Life in progress


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Now it’s my mother

My mum has been admitted to hospital with pneumonia. They took her by ambulance last night since I wasn’t able to leave the house to pick her up–not because it was that urgent.

But anyway, funny story.

I just got off the phone with one of the nurses in the emergency department. Apparently my mother is concerned that she doesn’t have her teeth. She must have taken them out before she was transported, so the nurse asked me if I could go get them and bring them in.

My response: That has to be one of the most interesting things I’ve even been asked to do.

And we laughed, and laughed.


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Update on Alex – It Continues

Before I start really writing this post, I have to mention that I’m punch drunk from staying up for thirty-four hours. I feel like my eyeballs are swimming in frontal lobe fluid, if there is such a thing. So I apologize in advance if this post isn’t grammatically correct, sensical, or replete with the correct amount of outrage, though that last one really shouldn’t be a problem.

You see, after I wrote last night that if I didn’t show up until late today, I was probably dealing with some challenges, I tried to put Alex to bed and failed. He began coughing, then he began having a hard enough time breathing that I figured it was time for the hospital. We arrived there at about 10:40pm.

But of course when he wasn’t laying down, he wasn’t that bad. So we sat. And sat, and sat. I’m not sure what time it was when he got a room with a bed–1:30 maybe?–but I remember looking at the clock at 4:44 when he was getting his IV in. They brought me a breakfast at 5 … Saw the second doctor of the night at 9:30 … Got a room on the floor (he was admitted with pneumonia, again) at about 3:15, and I got out of there at 4pm. I think I slept for about 45 minutes, sitting in a chair. And Alex did no better. The few times he dropped off other than the 45 minutes he got when I slept, they woke him up after 3 minutes of sleep.

He was still refusing to lay down when I left.

So yeah, all that to say Alex is back in the hospital for at least one night. And I’m falling asleep while I tyepzzzzzzzzzzzzzzzzz


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Update on Alex #2

I woke up from nine hours of sleep this morning and called the hospital before I got out of bed. The nurse I spoke to was a nice lady named Heather who introduced herself as someone who used to work at Alex’s school, so she knows a bit of sign language.

She told me he had a good night and was up early, out of bed, and following his nurse (the one on shift from last night) around in the corridors. He got tired of his IV, probably when another IV pole with his feeding pump was added to the mix, so he unhooked the IV. They left it off.

When Heather came in at 7:00, he took one look at her and knowing she had the ability to tell him off in ASL, he went back to bed.

“That was a couple of hours ago though,” she told me. “Now he’s following me around.”

He was doing okay, so I decided to have a shower and take my time getting to the hospital. Only to immediately be told to go home when I got there … by Alex. I sent this text to my best friend, John:

At the hospital waiting to see the doctor. Alex wants me to go home. I’m cramping his style. Sitting alone in his room while he hangs out with the nurses.

To which John replied:

I can sympathize. It’s hard to woo a nurse with your mom around.

So he’s obviously feeling better. But they wanted to keep him one more night for observation. His oxygen levels are still very low when he’s laying down, his heart rate is still through the roof, and he’s still working to breathe.

Hopefully he’ll be home tomorrow and all the heart issues will have arisen from the combination of the pneumonia and the extra drugs. And hopefully the antibiotics will work their miracle.

Thank you again for all your awesome well-wishes. I appreciate each and every one.


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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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#SoCS – Volition

Gah! Why do I struggle so much to write something positive these days? To write something – anything – of my own volition? I swear, if it wasn’t for these prompts, I might not write at all for weeks on end. Which is strange, really, because when I start, it’s natural. It just goes. Before I go off on a tangent, I want to say thank you. To all of you who help me keep going with my prompts. Because though they may originate here, if it wasn’t for all of you reading and participating in them, I’d have no motivation to keep it up some weeks. Thank you. 🙂

I’m not going to get this posted on Saturday, but I’m happy I at least started it with a minute or two to spare. I’ve spent the day working and occasionally tending to my son Chris’s needs.  And talking to my mother on the phone about half a dozen times, allaying her fears that there really is nothing to worry about when she finds a note in her room that she wrote about something she was trying to remember to do three years ago. I swear sometimes it would be best to go through her room when she’s not there and empty it of every scrap of paper once a week. She’s always been a worrier. Now she finds something to worry about and with her dementia, she can discover it for the first time ten times in the space of an hour.

I actually tried not giving birth to an only child, as I am, so that only one child would be stuck looking after me as I age. As it turns out, my eldest will likely be stuck with both me and his two disabled brothers. Life just isn’t fair.

Gah! Why do I struggle so much to write something positive these days? (Yes, I copied that.)

So I was at the hospital with Alex the other day, and I was amazed at how many people I recognized from when he was there for the first eight months of his life. Not only that, there were so many of those people who recognized me. I must have made an impression. Or Alex did. He was admitted for a night after vomiting as he came out of anaesthesia and they were afraid that he may have aspirated. He spent the night with the nurses at the desk, apparently, hanging out and flirting. He didn’t want to leave the hospital when it was time to go. I remember one time he was in ICU after having a second surgery in the space of two days. He’d had sleep apnea and the first surgery wasn’t as successful as they’d hoped. Even after all that, he managed to wrap every nurse in the ICU around his little finger. I’ve never seen so many nurses drop what they were doing (in the bloody ICU!) to wave goodbye to him as they wheeled him on a stretcher out the door and back up to the ward where he would spend another few days recovering.

He gets it from his dad, I’m sure. I’m simply not that charming.

But soon we won’t have that particular hospital to go to anymore. It’s a children’s hospital, and Alex will turn seventeen in five weeks. I fear the adult hospital may not be as good.

Gah!

Alex’s first day of school, Sept. 5, 2017.

 

Check out the Stream of Consciousness Saturday prompt at the following link and read all the other posts. And join in too, if you’d like. It’s fun! https://lindaghill.com/2017/09/15/the-friday-reminder-and-prompt-for-socs-sept-1617/


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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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…And Then Nothing Gets Fixed

I was walking out of Best Buy at 12:45 today when I got a call from Alex’s school. He was in the office, feeling unwell; would I come and get him. That’s not really a question. Ever. It’s a command. So I threw gently placed my newly repaired laptop in the car and drove over to get him. Best Buy had had my laptop for a week. It was shutting down without warning on battery power when the charge reached 66%. I figured it was a defective battery – they changed both it AND gave it a new hard drive.

Anyhow, I got to the school and was informed that my darling little son was feeling tired and wanted to go home. Yeah, not much of a reason. BUT, one I have no choice but to take seriously. First was the arrhythmia from the weekend, coupled with cold sweats a couple of days ago and then I was informed by the teacher that his lips had gone blue three times last week (thanks for letting me know sooner) and this all adds up in my mind to congestive heart failure. Regardless of the fact that he just went for an echocardiogram last week that showed no new problems, and ignoring the impish look of “I’m faking this” on his dear little face, I decided to take him to the emergency.

Six (count ’em) 6 hours later, we arrived back home. The EKG they did today showed there were no issues with his heart – neither did the x-ray. However, I must give honourable mention to the people who kept me entertained in the waiting room. The first was a heavily tattooed lady who lost her $1.50 in a vending machine and proceeded to inform a security guard at the top of her lungs, “IT WASN’T JUST A PENNY!” The second, and most impressive by far, was an elderly lady who clearly had no idea where she was, demanded in a tone fit for a Shakespearean Queen to be let out of her cage. Seriously, if that woman wasn’t still an opera singer – and her annunciation! It was out of this world!

Where was I? Oh yes, back at home. I ate my dinner while Alex was hooked up to his feeding pump and then I got my laptop out. New hard drive meant all the crap that comes with a factory-installed OS was present and accounted for, as was the particularly loathed Internet Explorer. So I’m sitting on my couch, miserably getting rid of everything I don’t want and … poof! 66% the laptop shuts down.

I’ll be taking the computer back to Best Buy tomorrow. Hopefully I won’t be taking the kid back to emerg. Still, don’t really know what’s wrong with either of them.