Life in progress


#SoCS – Independence

The last thing I put in my fridge: my son’s heart medication.

Since he turned twenty, Alex has decided he wants to be more independent. Which, of course, makes sense for a twenty-year-old.

He’s been washing my dishes, and he’s kinda getting good at it. I only have to re-wash half of them. He’s been getting his own tube feeds ready, and he’s even been making my coffee at night so I can just come downstairs and turn it on in the morning. It’s quite lovely, actually.

But he also wants to draw his own meds up into the syringes, and I won’t let him. Which makes him disappointed.

Because the fact is, he has not much aptitude for measurements. I watched him make my coffee tonight, insisted on being there, and sure enough, he lost count on his way to four scoops. He insisted that since he lost count, he should start again–without taking out what he’d already put in. I might have ended up with coffee I could stand my spoon up in.

Do I trust he’ll do the same with his heart medication? Absolutely. His independence is an overdose waiting to happen.

So if I come back online one of these mornings with my hair standing on end, it might just be the supercharged java.

Seriously thinking about getting a safe for my fridge, though. To put his heart meds in.

2019-2020 SoCS Badge by Shelley!

This terrifying post was brought to you by Stream of Consciousness Saturday. Find the prompt here and join in!


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.


My missing week

It all started Tuesday morning at 2:41am. I was woken from my sleep by one sick little boy. You have to understand that when this kid gets sick, he really gets sick. Stomach flu has, up until now, always landed him in the hospital because of his heart condition; his heart doesn’t do well with dehydration. So after being up since above mentioned 2:41 I took him to the hospital to get him set up on an IV before his condition became critical. Then I learned something new.

They don’t automatically hook up the IV anymore. First they try a very strong anti-nausea medication. So we did that, and after they were sure he would at least be able to handle electrolytes he was sent home.  Five hours later he wasn’t tolerating anything anymore, so back to the hospital. I’ve seen this kid when he’s been in distress, and believe me, I don’t want to go there again. It’s no fun seeing your 12 year old in cardiac arrest.

8:30pm we arrived in emergency again. 3:46am we were called into a room… still no real signs of distress from my little guy but he looked pretty dry having kept down the equivalent of two glasses of water all day – it was Wednesday by then. So we got into a room and he layed down on the bed and went to sleep. I managed to nod off for about 45 minutes sitting up in a chair. Then the doctor finally came in, woke me up, and demanded answers none of which I could remember right away, so she was pissed off. She informed me that they would give him some more of this wonder drug and try to feed him a half hour later, meanwhile they would send him for an x-ray because of his history of bowel obstructions. That was fine. We got back from that and I nodded off again, sitting up – 45 minutes later (an hour and a half after he’d had the drug) two nurses came in with a needle saying the doctor had ordered blood work on him.

“I thought you were going to try to give him water!” I exclaimed, tired beyond belief by this time.

“Nope,” they said. “Just blood work.”

They asked me to hold him still for them while he screamed his poor bloody head off but I was too much of a wreck. I felt sick. So they went about it without me. When I did turn to help they had poked him, unsuccessfully, and given up. Oh, did I forget to mention the discussion they’d had between them where the least experienced of them had offered to let the more senior one try and the more senior said no, you try it. … even though I told them it was difficult to find a vein on him when he WASN’T dehydrated? Yeah, that happened.

Then they left. Without saying a word to me, they walked out. I managed to snag one of them about half an hour later and I asked her what was happening.

“What’s happening with what?” she asked.

“With the blood work!” I said, shaking my head.

“Oh, he struggles too much and we don’t have enough people to hold him,” she said, and rushed away. This was at 6:50am.

I stood up after that, hoping to catch a glimpse of someone who would actually tell me what was going on. At 8:30am the doctor finally came in. She took one look at Alex, who by this time was busying himself getting packed up to go, and one look at me, and declared I looked worse than he did.  Well yeah, after 4 hours of sleep over the course of 48, what would you expect? I was total mush.

I had everything explained to me, finally. His x-ray didn’t look normal so she told the nurse to let me know they were holding his water and giving him blood work instead… but the nurse didn’t. Had they done that I would have been able to tell them he looked better and saved him from being poked unnecessarily. Apparently the doctor had also requested a bed for me so I could get some sleep… Lovely.

So we were sent home.

Then I got sick.

I completely lost Thursday to sleep and, well, bed. There was NO WAY I was going back to the damned hospital.

So here I am. Both of us are better and almost back to normal. So what did I miss?