Ok Charlie, it's officially time to give mom a break!
Adrian and I have both had a nasty cold and I've just been waiting around for Charlie to get it. If she does....well it's a BAD cold...it will be hard on her. So Jan 30 she sleeps all day. Symptom #1. Then when I put her to bed, her heart starts racing. Symptom #2. I start watching her closely at this point. Then at midnight she wakes up with a fever. 104! Symptom #3. (Duh.) I gave her some tylenol and it came down to 99 or so. Then she started having seizures. She always does that with fever reducers which is why I rarely give her them, but with a 104 fever I usually cave. I've figured out that it's not the temp itself that usually causes the seizures, it's a quick change in temp. Usually she seizes after I give the tylenol and it starts to wear off and she spikes again. But I guess this time it was because of the quick drop in temp? That's a new one on me. But I digress. I woke at 4 to give her another dose only this time it didn't help. And at 5:30 she started having difficulty with her sats. She had one desat down in the 70's, but came right back up. At that point I started packing to take her in.
I had the car packed and I started getting her ready. I put her in a clean onesie and started changing her diaper. Right then, her head kind of fell to the side and her eyes closed. Her nostrils started flaring and she was having really bad chest retractions. Her pulse-ox went off and she fell to 76 and STAYED there. Holy $hit! So I called the squad.
It only took them a few minutes to get there but she was almost completely fine by then. 91% and breathing almost normally. And conscious. Weird. But I let them take her since I figured she'll need to go eventually anyway. She was doing fairly well in the ER. She did well all day. They did the xrays and the IV and the abx. Typical stuff. Her xray was "hazy" but it was not pneumonia. She'd been coughing out some yellow secretions, but nothing too bad. After a few hours she didn't even seem sick! So they talked about sending her home. But the doctor was hesitant because she "wants her at baseline" before sending her home. What a joke. Charlie will never be "at baseline" even with a minor cold. And she cannot stay in the hospital for a minor cold! So I was pissed and frustrated. I cried. It's New Year's Eve and I don't want to be in the hospital!
I tried to explain all this to the doctor and she came up with every excuse. "Well what if she gets worse?" We'll bring her back in. "Well, what if she spikes a temp again?" I'll give her tylenol. "Well what if she needs even more oxygen?" We have oxygen at home. "Well what if she needs suctioned?" Are you f-ing kidding me!? Suctioned? That thing I've been doing 30 times a day for over a year!? Whatever. We stayed the night.
But she had another "episode". She was in her crib and I was on the bed. She was napping but then started coughing a little. I got up to see if she needed suctioned but she only had a little in her mouth. Her sats were 82 though. I suctioned out that tiny bit (really, she'd normally not struggle with that) and she just dropped to 79. Then she did a big jerk and came up to 84. At this point the nurse came in and I'm trying to get Charlie back up. Suctioning is not helping. I picked her up and the nurse turned her oxygen up. Didn't help. Charlie started *bawling*. I could NOT calm her down! Then after a couple of minutes she was fine and at 95%.
Okey-dokey.
So now I'm thinking seizure related. She's got a minor cold that should not cause drops like that. The big jerk and the excessive crying are a huge tip-off. When she did it the day before, it was after she'd already had a few seizures. Thankfully she has a neuro appointment coming up. As long as she doesn't start doing this several times a day we'll just wait for the appointment.
The next morning a different doc came in. One who is familiar with Charlie (thank goodness!) and he saw no reason to keep her. I told him what I thought about her episodes being seizure related and he agreed that I should look into it. He also didn't think she was sick enough to just have random drops like that. And we also talked about having a slightly different routine with Charlie. They know her issues. They know she's very well cared for. They know we have the ability to do most of her care at home. They know I'll bring her back if she gets worse. So he said he'd discuss with the other ER docs (2 of which are also familiar with Charlie) about not admitting her over every little thing and just getting her home asap assuming she's not actually struggling. This sounds *excellent* to me! He really thought it was ridiculous that we had to stay the second night. He knows I'm competant. He knows that while Charlie appears very sick to people who don't know her, that she can't just live in a hospital. Her issues are her issues and she isn't going to get "better".
So our future plan is go to Licking for everything and if they can't handle it, to send her to Children's. Otherwise, we're doing the usual (xrays and abx) and going HOME.
So we're back home. And Charlie is definitely sick, but she's not bad at all. She's not her usual smiley self, but she's not requiring much oxygen and she's coughing the gunk out.
Adrian and I have both had a nasty cold and I've just been waiting around for Charlie to get it. If she does....well it's a BAD cold...it will be hard on her. So Jan 30 she sleeps all day. Symptom #1. Then when I put her to bed, her heart starts racing. Symptom #2. I start watching her closely at this point. Then at midnight she wakes up with a fever. 104! Symptom #3. (Duh.) I gave her some tylenol and it came down to 99 or so. Then she started having seizures. She always does that with fever reducers which is why I rarely give her them, but with a 104 fever I usually cave. I've figured out that it's not the temp itself that usually causes the seizures, it's a quick change in temp. Usually she seizes after I give the tylenol and it starts to wear off and she spikes again. But I guess this time it was because of the quick drop in temp? That's a new one on me. But I digress. I woke at 4 to give her another dose only this time it didn't help. And at 5:30 she started having difficulty with her sats. She had one desat down in the 70's, but came right back up. At that point I started packing to take her in.
I had the car packed and I started getting her ready. I put her in a clean onesie and started changing her diaper. Right then, her head kind of fell to the side and her eyes closed. Her nostrils started flaring and she was having really bad chest retractions. Her pulse-ox went off and she fell to 76 and STAYED there. Holy $hit! So I called the squad.
It only took them a few minutes to get there but she was almost completely fine by then. 91% and breathing almost normally. And conscious. Weird. But I let them take her since I figured she'll need to go eventually anyway. She was doing fairly well in the ER. She did well all day. They did the xrays and the IV and the abx. Typical stuff. Her xray was "hazy" but it was not pneumonia. She'd been coughing out some yellow secretions, but nothing too bad. After a few hours she didn't even seem sick! So they talked about sending her home. But the doctor was hesitant because she "wants her at baseline" before sending her home. What a joke. Charlie will never be "at baseline" even with a minor cold. And she cannot stay in the hospital for a minor cold! So I was pissed and frustrated. I cried. It's New Year's Eve and I don't want to be in the hospital!
I tried to explain all this to the doctor and she came up with every excuse. "Well what if she gets worse?" We'll bring her back in. "Well, what if she spikes a temp again?" I'll give her tylenol. "Well what if she needs even more oxygen?" We have oxygen at home. "Well what if she needs suctioned?" Are you f-ing kidding me!? Suctioned? That thing I've been doing 30 times a day for over a year!? Whatever. We stayed the night.
But she had another "episode". She was in her crib and I was on the bed. She was napping but then started coughing a little. I got up to see if she needed suctioned but she only had a little in her mouth. Her sats were 82 though. I suctioned out that tiny bit (really, she'd normally not struggle with that) and she just dropped to 79. Then she did a big jerk and came up to 84. At this point the nurse came in and I'm trying to get Charlie back up. Suctioning is not helping. I picked her up and the nurse turned her oxygen up. Didn't help. Charlie started *bawling*. I could NOT calm her down! Then after a couple of minutes she was fine and at 95%.
Okey-dokey.
So now I'm thinking seizure related. She's got a minor cold that should not cause drops like that. The big jerk and the excessive crying are a huge tip-off. When she did it the day before, it was after she'd already had a few seizures. Thankfully she has a neuro appointment coming up. As long as she doesn't start doing this several times a day we'll just wait for the appointment.
The next morning a different doc came in. One who is familiar with Charlie (thank goodness!) and he saw no reason to keep her. I told him what I thought about her episodes being seizure related and he agreed that I should look into it. He also didn't think she was sick enough to just have random drops like that. And we also talked about having a slightly different routine with Charlie. They know her issues. They know she's very well cared for. They know we have the ability to do most of her care at home. They know I'll bring her back if she gets worse. So he said he'd discuss with the other ER docs (2 of which are also familiar with Charlie) about not admitting her over every little thing and just getting her home asap assuming she's not actually struggling. This sounds *excellent* to me! He really thought it was ridiculous that we had to stay the second night. He knows I'm competant. He knows that while Charlie appears very sick to people who don't know her, that she can't just live in a hospital. Her issues are her issues and she isn't going to get "better".
So our future plan is go to Licking for everything and if they can't handle it, to send her to Children's. Otherwise, we're doing the usual (xrays and abx) and going HOME.
So we're back home. And Charlie is definitely sick, but she's not bad at all. She's not her usual smiley self, but she's not requiring much oxygen and she's coughing the gunk out.
2 comments:
Poor thing! I can't imagine having to be sick on top of everything else. I have to say that I am so impressed with how well you fight for your daughter -- very inspirational!
Sorry you had to be in... I HATE when they don't listen! I hope you get the seizure thing figured out soon!
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