Oops, I did it again!

So, let's talk about the dangerous minefield that is blogging.

A few months ago, I started a system of blogging where I wrote an entry and then post-dated the publication by one or two days. In this way, I could sort of better monitor the large amount of spew that springs forth from my mouth/keyboard. Most posts were fairly innocuous, and if I wrote them and didn't think about them too much afterwords, then they were probably fine and I could forget about them and they would be automatically published. Sometimes, I would write something, and the next day the whole post, or maybe part of it would bother me enough that I knew I either had to fix it or switch it to nonpublic/draft status by the end of the day.

This method has been working out really well for the most part. I can have the freedom to write what I want, thinking it will be for publication which does something to my psyche in that if I write just for myself...I tend to not write at all. Then, I have built in that much needed space to reflect on what I've written. It is an auto modulator. If I think about the deadline all day with anxiety...I know something needs to be fixed. This helps in my asking myself why did I write that horrible thing that needs to be fixed. It's almost as good as a free visit to a shrink. So, it is all therapeutic and works better than anything I've done so far between drafting and never writing or publishing anything and hitting publish the second my brain delivers its pressurized drivel to my fingers faster than I can type it.

So, all is good....

Except for...

When I'm planning to unpublish something I wrote right after my kids go to bed but instead I find myself sitting in the ER with my son when the deadline comes...

and goes...

And the thing gets published.

So, I'll get to my ER story in a second. But, yes, I decided that what I wrote about the extended family was just fine and dandy writing for me to sort out for myself, but really wasn't blog worthy or sensitive enough to the people involved. Someone told me once that I was "ballsy" for writing about the in-laws the way everyone wants too. I don't know that it is ballsy, I just don't have anything to lose. But just because I don't really care that much about the consequences doesn't make it the right thing to do. So I planned yesterday morning to send it back to draft and leave it there, but I did not get a chance to get to it all day. I figured I would have four hours after the kids went to bed and, alas, I didn't and it was published and I wish it hadn't been. And, even better luck for me, today when I wanted to take care of it, typepad was down for the majority of the day and I lost all access to my site.

Sometimes I see this blog as just something that is out there for destiny to deal with. If someone reads something on my site, maybe they were meant to read it at that particular time. I could never know this and seek them out, but they can seek out what they need and may find it here. I know it has happened when I get letters from desparate mothers whose children have just been diagnosed with a disability. Or a scared disabled mom, or pregnant mom of twins who thought she was alone and was so grateful to find that she wasn't. Or the times when I read other people's blogs and find something there by accident that makes me not feel so alone. So, the thing got published and I don't think the world is going to end because of it. Maybe it helped someone out there who just happened to read it on the day it was up. (And aren't the google search stats fascinating? Sometimes I read the search perameters and just feel their pain, like if it is "life expectancy glioblastoma multiforme". Other times I read them and feel their psychosis! And I'm still highly amused that "I hate Oprah" is still the number one google to my site. But I digress...)

I don't think anything I wrote was so awful, but I always think that and then one or two little lines or words will get someone else irked and all hell with break loose. Besides, it was really long and probably really boring and self-serving...so it's gone now. I still like my system, but next time I decide to unpublish something, I'm going to take the two seconds to do it the second I think of it. You all should see my list of draft posts. Well, then again, maybe you shouldn't.

Aaaaaanyway, about the ER trip. Yesterday, Aaron was running a slight temp in the 99-100 range. As per my instructions after his last seizure, I immediately gave him Tylenol to bring it down. It never really did bring it down all day, but it never got any higher, either. Then, at bedtime, he had another seizure. It was more focal this time and lasted about 3-4 minutes. It was not really as much a tonic clonic type, it was more of a drop seizure and then convulsions on the right side of his body.

I was a little concerned, but not much because we had been through this before. His ped told me that I really didn't need to go to the ER or anything if he had another seizure, but to call his office when it happened, night or day. I wasn't even in a hurry. Aaron was a bit dazed and out of it after the seizure, so I had him stay up with me for another half hour or so to comfort him and monitor him before I put him in bed. I gave him more Tylenol and he fell asleep the instant I put him in bed. Then I called the answering service.

A nurse called me back and asked me all the pertinent questions, and because the seizure was focal (not all over his body) and his temperature was not that high, she didn't think it was a febrile seizure. I kind of felt like it was, but what do I know? She wanted me to bring him to the ER right away. And not just any ER, the one all the way across town. The big, huge, trauma 1 ER that was in the "bad" section of town so I knew there would be a billion people there. I didn't want to go, but I didn't want to take a chance, either. She offered to have the on-call ped call me and give me his opinion, so that's what we did. He wanted him to come in as well. He said he would tell the ER I was coming in and he would meet me down there.

So, by this time, it is like ten at night. D was over, so he stayed to babysit Naim, who was sleeping, and my dad and I got Aaron up and drove him all the way across town. We were triaged pretty quickly but then were sent out to wait. And wait. And wait.

I knew this would happen. There were like, 40-50 people in the waiting room of that ER. I started to do my own triaging of the patients. I asked a few people whose kids looked about as sick as mine (not very sick) how long they had been waiting. They were telling me that it was up to 5-7 hours. There was a three week old baby there with a high fever who was also supposed to meet the ped on call who had been there for 4 hours. She was crying so hard for so long that Aaron kept putting his hands over his ears. And more people were coming in who looked sicker than my kid.

So, I calculated that by the time we got in, it would almost be morning and we could just go to the doctors office. I strongly suspected that if we did get into the ER that night, the doctor would look at Aaron for two seconds and tell me we needed to follow up with a ped neuro to get an EEG. Well, my doctor's office could do that,too. And we would get a bit of a night's sleep in the process.

So, at about 1 am, I told the ER staff I was leaving. We got home at 2ish, and I put Aaron to bed. At 8 am, I called my doctors office and gave the whole spiel to another nurse. I said exactly the same information, and she thought it sounded like a febrile seizure. She thought he should be seen, but no hurry. Can I come in at 4:45pm?

Sheesh. Do they drag you into the ER just to pay the bills or is it a liability thing? They must have some idea that you are going to have to sit in the germy, gross waiting room with a sick baby for upwards of seven hours. Do they really think that is the better option than just waiting until morning? I mean, I would rather have them tell me that I had to stay up all night and watch my child at home to monitor him than to drag the poor kid to the ER. I wonder if I'll get billed for the three seconds we spent with the triage nurse. His last ER visit was over $2000.

He was grumpy and feverish all day today, too. When I took him in, the doctor found that he has hand-foot-mouth disease. Which, in a way is good news, because that means that it was probably almost definitely a febrile seizure rather than epilepsy or some kind of brain tumor. (Thanks, Dad, for bringing that up. I only allow one brain tumor per immediate family, thank you.) But, as I suspected, she is also referring me to a ped neuro to get his opinion.

She thinks that because of the length of Aaron's seizures, it might be good to put him on a certain medication that will shorten the seizures. She wrote down the name, but I can't read it now. I'll have to ask D or someone tomorrow to read it. It is something that I would not give him everyday, but have it around to administer when he has the seizure to get him out of it quickly. The danger is, I guess, that seizures can affect heart rate and respiration, and thus, pulse ox. So the longer the seizure, the longer the kid is with compromised oxygen to the brain. Since Aaron has had these seizures with very low temps and for long periods of time, she wants me to have "a plan." She wants me to make myself a little kit with thermometer, timer, Tylenol, this medication, and maybe like a laminated card giving directions about what to do and stuff. Anyway, all stuff I'm supposed to talk to the neurologist about.

So that is on the agenda. Now I just have probably a few more days of Aaron feeling crummy, and then I'll look forward to Naim getting hand-foot-mouth disease as well. With twins is just pointless to even try to save him from it. But supposedly once you get it, you don't get it again. (And, no, dad...its not the disease that cows get. Cows don't have hands.)

Comments

[That Girl]

I had the same discussion at a peds website where they were claiming that people who call to find out if the ER is busy dont have an emergency.
I pointed out the same thing - that if I break a bone its FASTER for me to take a pain med and go in the morning to the ER rather than go to the ER and wait for hours on a weekend night.
Doesnt mean that broken bones dont require an ER.
I hope Naim miraculously escapes HFM.
Funny, my mom used to tell my brother he was going to get that all the time because of his habit of chewing gum previously chewed and on the sidewalk/restaurant table.
Aaron probably got it from your non-spotless floors. (KIDDING!)
btw - you are right on the money re: obsessive cleaning. That kind of compulsive cleaning has nothing to do with dirt, and actually being very clean can exacerbate their anxiety because it leaves them nothing to do.

[cherylc]

I read the family post, and it took me aback a little bit. Not very much, but I kept wanting to give you advice about toning it down (although I didn't; that would be obnoxious). But it would hurt my feelings to read some of the stuff you wrote if it was about *me*. You're right, though, it wasn't terrible.

I'm sorry about Aaron's seizures. It must be terrifying. And I don't like waiting at the ER either, although my daughter always finds *someone* to play with.