Who has questions?

 Who has questions?


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Daring continued

So, let's continue... we left off on Daring having multiple episodes of not breathing in the middle of the night at home and we called 911.  Paramedics arrived and at that point, Daring was fine - heart rate and oxygen levels appeared normal from the brief eval they did to him. He passed some serious gas at some point while we were all sitting there and the one ambulance tech seemed to just accept that as what was going on, "Maybe he was holding his breath trying to pass gas?" I felt so foolish when she said that. Like I'm some idiot making a deal out of her kid having to fart.  I was feeling like a crazy person, but this thing happened! What was it? What if it happens again and I'm not awake to realize it?  I just remember the one paramedic looking at me and telling me we could go to the hospital - no harm in having Daring looked at ... and that's what I needed to hear.  We went by ambulance to the closest hospital. I remember Daring being put on the bed and ...
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Tips on Tuesday: Rescue Meds

Our local drugstore at the time was thankfully right across the street, so husband and Darling headed into our house and I ran over to the drugstore to fill our rescue medication script we had been given ... but they didn't have it in stock.  Ok, settle the anxiety. Sure, you're sleep-deprived and on edge from everything the last few days have been, but settle, settle.  Our local drugstore calls around to other stores nearby and the closest that has the medication is about a half-hour away. Ok, you just want to sleep and snuggle your little one, but this is important. This is one thing we can have on hand to feel like we're doing something productive if she seizes again. So, back out on the road. ( Note from my journal for Darling: "I went out to fill your script and was so tired that I couldn't remember where I parked! Ugh!" ) This drugstore has it, takes the prescription, and fills it. It's under a different code though, is that ok? I have no idea!! They...
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Tips on Tuesday: Keep a Journal

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I think it's important to keep a journal.  I have a beautiful day-to-day calendar that I make notes in. On the monthly page, I mark the days & times seizures happened. Then on the day to day pages, I make notes of what actually happened: - time a seizure started, - when rescue meds were given,  - if we went to the hospital, - if there were med changes - any odd notes from the day that might somehow make some sort of connection down the line (examples: woke up super early, rash appeared after rescue meds, vomited earlier in the day, etc) This is good for reflection and to see changes over time. I know there are likely apps and such for this, but this has helped me. I also find writing it out has been a good (ok, maybe the correct term is more "necessary") way to process what happened as well. Here are the last two years in review: I just marked this off from my notes. This is a little skewed because some of the marks for Daring in January 2020 were myoclonic seizures t...
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