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<blockquote data-quote="slsh" data-source="post: 423771" data-attributes="member: 8"><p>Thank you all. I'm still a mess. Boo started to perk up late today. </p><p></p><p>The medication goof happened over a week ago with- seizure #1. I don't know if somehow that lowered his threshold so much that it allowed #2 to happen or what. I did get him into PCP today, who of course had no answers for me since every test that was done was spot-on normal, including all his medication levels. We don't bother with- EEGs anymore - his spasticity is so bad that even sedated into oblivion, he still is constantly moving and the EEGs are too chock-ful of artifact to pick up anything meaningful. I think his neuro is the only one who might have an answer, but I kinda doubt there really is an answer, which makes my control-freak self absolutely nuts. I want defined problems so we can figure out the solution. "Wait and see" and "I don't know" have to be the 2 phrases I detest the most. </p><p></p><p>I think part of what frustrates me is that, in the middle of the crisis, we're at the mercy of professionals who don't know Boo and who don't know his baseline. It doesn't instill a lot of confidence when I'm having to explain that he's still seizing to an MD. There is one RN in the ER who miraculously has been there the vast majority of our visits over the past 11 years, so he's a big help. Then, when we got to the floor Tuesday night, some rocket scientist had ordered heparin because Boo wasn't "ambulatory". Maybe I'm nuts, but does it make sense to give a blood thinner to a person who just had a massive seizure? Do we really want to add blood loss to the problem? I understand the worry about clots in sedentary folk, but.... can we put it in context here? Boo's activity level is minuscule on a good day. And of course the nurses think I'm outta my mind to question a physician's order. I'm also frustrated that so many medical professionals assume Boo's near-comatose at baseline. The on-call *neuro* was actually shocked when Boo laughed at something she said... "oh... he seems to understand me." Uhhhh, yeah. And then the followup call today from a nurse on the floor to see how he was - she didn't want to talk to me, only wanted to talk to him. Sigh... do you *have* his chart in front of you???? He has CP. "Oh, I'm soooo sorry."</p><p></p><p>We do have this down to a science. He always has a spare g-tube, adapters, and syringes in his backpack, because somehow hospitals never have adapters or g-tubes. I have learned to take his medications with us, because hospitals only carry generic medications and I worry about differences in formula between brand name and generic being just enough to lower his threshold. They will let us use our medications once the pharmacy verifies them.</p><p></p><p>The fear is what's just eating me up. I know I need to let it go - nothing I can do besides what we're doing, what is going to happen will happen, but... I just can't let it go. I'm back in high-alert mode, and it's exhausting. Every little noise he makes, I jump. He's in bed right now, giggling. *Giggling*. And I jump up to make sure he's okay. He greets me with his evil little grin because he *knows* I'm on edge and can be played like a fiddle. And the one and only word that he says really clearly? Mom. He's been saying that a lot the last 48 hours. I think it's a combination of wanting to make sure I'm alert, wanting to make sure I'm there (though I was touching him somewhere on his body the entire time he was in the hospital), and wanting me to fix it, which I really wish I could.</p><p></p><p>This too shall pass, hopefully. I'm just so scared. You guys are the only ones I can share it with-, and I do appreciate the ear (or eyeball <img src="data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7" class="smilie smilie--sprite smilie--sprite2" alt=";)" title="Wink ;)" loading="lazy" data-shortname=";)" /> ).</p></blockquote><p></p>
[QUOTE="slsh, post: 423771, member: 8"] Thank you all. I'm still a mess. Boo started to perk up late today. The medication goof happened over a week ago with- seizure #1. I don't know if somehow that lowered his threshold so much that it allowed #2 to happen or what. I did get him into PCP today, who of course had no answers for me since every test that was done was spot-on normal, including all his medication levels. We don't bother with- EEGs anymore - his spasticity is so bad that even sedated into oblivion, he still is constantly moving and the EEGs are too chock-ful of artifact to pick up anything meaningful. I think his neuro is the only one who might have an answer, but I kinda doubt there really is an answer, which makes my control-freak self absolutely nuts. I want defined problems so we can figure out the solution. "Wait and see" and "I don't know" have to be the 2 phrases I detest the most. I think part of what frustrates me is that, in the middle of the crisis, we're at the mercy of professionals who don't know Boo and who don't know his baseline. It doesn't instill a lot of confidence when I'm having to explain that he's still seizing to an MD. There is one RN in the ER who miraculously has been there the vast majority of our visits over the past 11 years, so he's a big help. Then, when we got to the floor Tuesday night, some rocket scientist had ordered heparin because Boo wasn't "ambulatory". Maybe I'm nuts, but does it make sense to give a blood thinner to a person who just had a massive seizure? Do we really want to add blood loss to the problem? I understand the worry about clots in sedentary folk, but.... can we put it in context here? Boo's activity level is minuscule on a good day. And of course the nurses think I'm outta my mind to question a physician's order. I'm also frustrated that so many medical professionals assume Boo's near-comatose at baseline. The on-call *neuro* was actually shocked when Boo laughed at something she said... "oh... he seems to understand me." Uhhhh, yeah. And then the followup call today from a nurse on the floor to see how he was - she didn't want to talk to me, only wanted to talk to him. Sigh... do you *have* his chart in front of you???? He has CP. "Oh, I'm soooo sorry." We do have this down to a science. He always has a spare g-tube, adapters, and syringes in his backpack, because somehow hospitals never have adapters or g-tubes. I have learned to take his medications with us, because hospitals only carry generic medications and I worry about differences in formula between brand name and generic being just enough to lower his threshold. They will let us use our medications once the pharmacy verifies them. The fear is what's just eating me up. I know I need to let it go - nothing I can do besides what we're doing, what is going to happen will happen, but... I just can't let it go. I'm back in high-alert mode, and it's exhausting. Every little noise he makes, I jump. He's in bed right now, giggling. *Giggling*. And I jump up to make sure he's okay. He greets me with his evil little grin because he *knows* I'm on edge and can be played like a fiddle. And the one and only word that he says really clearly? Mom. He's been saying that a lot the last 48 hours. I think it's a combination of wanting to make sure I'm alert, wanting to make sure I'm there (though I was touching him somewhere on his body the entire time he was in the hospital), and wanting me to fix it, which I really wish I could. This too shall pass, hopefully. I'm just so scared. You guys are the only ones I can share it with-, and I do appreciate the ear (or eyeball :winking: ). [/QUOTE]
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