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Post by jorgeandthekraken on Mar 24, 2022 15:00:30 GMT -5
I am more than willing to share custody with the fine people of Inforoo.
Today, there has been some improvement. Her eyes are more open, and open more, than they’ve been any time since Saturday. She’s moving her arms more. She’s still congested, but less so. They did an EEG scan overnight, and it looked normal, which is a good sign that her brain is doing ok, and even more an indication that this is an acute event, like an infection of some sort (botulism is still the leading candidate), rather than some sort of condition.
We’re not out of the woods, yet. She still fatigues quickly, her head still lags a lot, she’s not swallowing, and she’s floppier than they’d like. We’re definitely going to be here through at least the weekend, or likely somewhat longer. But this is the first day the attending doctor has said she’s seen noticeable improvement. So, we’re trying to take the positive stuff without getting our hopes too far up too early. We won’t have the results of the botulism test back until next week, and we have no idea what it could be if it’s not that.
Just crossing fingers for continued improvement, even if it’s tiny and incremental.
Do you want to dance while also thinking about all the ways you've failed as a human?
UPCOMING SHOWS 11/21 - Caribou @ Avant Gardner 11/23 - LCD Soundsystem @ Knockdown Center 11/25 - TV on the Radio @ Webster Hall 12/5 - LCD Soundsystem @ Knockdown Center 12/7 - LCD Soundsystem @ Knockdown Center 12/14 - LCD Soundsystem @ Knockdown Center
I am more than willing to share custody with the fine people of Inforoo.
Today, there has been some improvement. Her eyes are more open, and open more, than they’ve been any time since Saturday. She’s moving her arms more. She’s still congested, but less so. They did an EEG scan overnight, and it looked normal, which is a good sign that her brain is doing ok, and even more an indication that this is an acute event, like an infection of some sort (botulism is still the leading candidate), rather than some sort of condition.
We’re not out of the woods, yet. She still fatigues quickly, her head still lags a lot, she’s not swallowing, and she’s floppier than they’d like. We’re definitely going to be here through at least the weekend, or likely somewhat longer. But this is the first day the attending doctor has said she’s seen noticeable improvement. So, we’re trying to take the positive stuff without getting our hopes too far up too early. We won’t have the results of the botulism test back until next week, and we have no idea what it could be if it’s not that.
Just crossing fingers for continued improvement, even if it’s tiny and incremental.
We're so glad to hear that there's improvement, even if it's small. InfoRoo Baby will probably end up winning Ultimate Survivor.
Are you still switching off at the hospital? Can we help with like a seamless gift card, like crazykittensmile suggested?
Post by jorgeandthekraken on Mar 24, 2022 16:23:06 GMT -5
I'm going to say something I never in my life thought I'd say:
I'm very happy to share the news that my daughter has botulism.
It's a preliminary positive that needs to be confirmed, but we're told that false negatives are FAR more likely than false positives. We're very relieved. Since we gave her the antitoxin infusion yesterday and apparently caught it decently early, full recovery is expected. We'll still be in the hospital a while (until at least some time next week), and there's some PT in her near future, but that's OK by me given we're going to ultimately walk out of here with a healthy baby.
Apparently, only around 100 babies per year in the entire United States contract infant botulism, and it's even rarer in urban environments. Yahtzee, I guess?
Thanks, everybody, for your concern and for giving me a place to vent about it. It's really so appreciated. Since we're still here a while, I won't say no to a Seamless card or something, because while the doctors here are awesome, the food is definitely not. I'll drop crazykittensmile a DM about it.
Excuse me while I go exhale for fifteen minutes straight.
Do you want to dance while also thinking about all the ways you've failed as a human?
UPCOMING SHOWS 11/21 - Caribou @ Avant Gardner 11/23 - LCD Soundsystem @ Knockdown Center 11/25 - TV on the Radio @ Webster Hall 12/5 - LCD Soundsystem @ Knockdown Center 12/7 - LCD Soundsystem @ Knockdown Center 12/14 - LCD Soundsystem @ Knockdown Center
Post by Jim Watson on Mar 24, 2022 16:32:31 GMT -5
Been following along with your updates, so happy to hear that they've figured out what it is and treatment has already begun. What a crazy and rare thing to happen. Sending all the love to you, your partner, and your strong little baby. Full recovery coming in hot
How in the hell did our InfoRoo baby get botulism? I bet it was that damn Gerber baby food.
We really need to stop baptizing these babies in mud!
Seriously, though, I'm sure you're both so relieved. Congrats to having the right info - I'm sure a better streamlined method of care can start now that you know what you're dealing with!
Post by jorgeandthekraken on Mar 30, 2022 12:14:00 GMT -5
Doing much better! We’ve been getting in some bottle feeds (as opposed to the feeding tube) the past couple of days, and she continues to get stronger and regain her full muscle function. Right now, they’re telling us discharge could happen somewhere Friday to Monday, depending on how things progress. We are doing lots of PT, working on feedings, and just hoping she continues to improve.
Had a fun curveball the other night, though, in that she started having some blood in her poops. Being on frayed nerves as we are, we, of course, totally freaked out. But it looks likely a milk protein allergy, which happens a lot at this age. My wife has to give up dairy for a while, which sucks for her (although I got some GREAT vegan substitute recommendations from Rummy 500), but it shouldn’t hurt the baby and kids typically grow out of it by 1 year old.
So, yeah, hanging in. We’d like no more medical stuff for a while, please, but things are on the uptick.
Also: I said this to crazykittensmile privately, but THANK YOU so much to everyone for the support, and especially for the food delivery gifts. I’m legit floored by your generosity, especially given I’ve never even met any of you in person, yet (but if you’ll be at Roo I’m going to hug the shit out of you). I’m so very obliged.
Do you want to dance while also thinking about all the ways you've failed as a human?
UPCOMING SHOWS 11/21 - Caribou @ Avant Gardner 11/23 - LCD Soundsystem @ Knockdown Center 11/25 - TV on the Radio @ Webster Hall 12/5 - LCD Soundsystem @ Knockdown Center 12/7 - LCD Soundsystem @ Knockdown Center 12/14 - LCD Soundsystem @ Knockdown Center
jorgeandthekraken I admittedly never really pop into this thread so I didn't know all this stuff was going on with baby in recent weeks! Only knew about the dairy allergy part so so glad to see y'all got it diagnosed and medicine treatment started!
Considering you've found the need to respond to my threads as if you are threatened by me I offer you some peace my confused counterpart. May you find peace in your restless soul.
Vieux
Global Moderator Moderator Goddess Extraordinaire
Doing much better! We’ve been getting in some bottle feeds (as opposed to the feeding tube) the past couple of days, and she continues to get stronger and regain her full muscle function. Right now, they’re telling us discharge could happen somewhere Friday to Monday, depending on how things progress. We are doing lots of PT, working on feedings, and just hoping she continues to improve.
Had a fun curveball the other night, though, in that she started having some blood in her poops. Being on frayed nerves as we are, we, of course, totally freaked out. But it looks likely a milk protein allergy, which happens a lot at this age. My wife has to give up dairy for a while, which sucks for her (although I got some GREAT vegan substitute recommendations from Rummy 500 ), but it shouldn’t hurt the baby and kids typically grow out of it by 1 year old.
So, yeah, hanging in. We’d like no more medical stuff for a while, please, but things are on the uptick.
Also: I said this to crazykittensmile privately, but THANK YOU so much to everyone for the support, and especially for the food delivery gifts. I’m legit floored by your generosity, especially given I’ve never even met any of you in person, yet (but if you’ll be at Roo I’m going to hug the shit out of you). I’m so very obliged.
Glad we could be of help to you. Can't wait for my hug.
Try not to sweat the dairy allergy. The same thing happened with our second one and it passed. It's all scary while it's happening but in the rearview it's just a thing that happened.
Do you want to dance while also thinking about all the ways you've failed as a human?
UPCOMING SHOWS 11/21 - Caribou @ Avant Gardner 11/23 - LCD Soundsystem @ Knockdown Center 11/25 - TV on the Radio @ Webster Hall 12/5 - LCD Soundsystem @ Knockdown Center 12/7 - LCD Soundsystem @ Knockdown Center 12/14 - LCD Soundsystem @ Knockdown Center
How's the little one doing? Thought of you guys today!
TL;DR: Inforoo Baby is doing well, and, while not back to 100%, is on the road to full recovery!
Long answer: Being home has been a huge relief (12 days in the hospital: 0/10 would not recommend), and Emma is recovering well. Apparently, it can take a few weeks even post-discharge to fully get back to normal. She's going strong with her PT, and if she's not yet where she was with things like tummy time/lifting her head, she's certainly improving steadily and a LOT better than even a week ago. The big challenge has been feeding. They had her on a feeding tube most of the time we were there, and her ability to suck degraded thanks to the botulism fucking with her neck muscles and swallow reflex, plus lack of practice, so getting her back on the boob is an ongoing process. We're kind of back to the newborn phase in terms of frequency of feeding attempts/lack of sleep overnight in an effort to reacclimatize her to breastfeeding, which is a drag for Mom and Dad, who were looking forward to the "things getting easier" time everybody told us was coming at the 3-month mark. That said, it should resolve in a week or two (fingers crossed), so we're just powering through and reminding ourselves how lucky we are that she never ended up in the ICU (most botulism babies do), and that she's ultimately going to be fine.
Thanks for asking after her! I've been telling her all about her new mommies and daddies, and when I asked if she's excited to cast her first Survivor vote some time soon, she didn't say no!
Do you want to dance while also thinking about all the ways you've failed as a human?
UPCOMING SHOWS 11/21 - Caribou @ Avant Gardner 11/23 - LCD Soundsystem @ Knockdown Center 11/25 - TV on the Radio @ Webster Hall 12/5 - LCD Soundsystem @ Knockdown Center 12/7 - LCD Soundsystem @ Knockdown Center 12/14 - LCD Soundsystem @ Knockdown Center
How's the little one doing? Thought of you guys today!
TL;DR: Inforoo Baby is doing well, and, while not back to 100%, is on the road to full recovery!
Long answer: Being home has been a huge relief (12 days in the hospital: 0/10 would not recommend), and Emma is recovering well. Apparently, it can take a few weeks even post-discharge to fully get back to normal. She's going strong with her PT, and if she's not yet where she was with things like tummy time/lifting her head, she's certainly improving steadily and a LOT better than even a week ago. The big challenge has been feeding. They had her on a feeding tube most of the time we were there, and her ability to suck degraded thanks to the botulism fucking with her neck muscles and swallow reflex, plus lack of practice, so getting her back on the boob is an ongoing process. We're kind of back to the newborn phase in terms of frequency of feeding attempts/lack of sleep overnight in an effort to reacclimatize her to breastfeeding, which is a drag for Mom and Dad, who were looking forward to the "things getting easier" time everybody told us was coming at the 3-month mark. That said, it should resolve in a week or two (fingers crossed), so we're just powering through and reminding ourselves how lucky we are that she never ended up in the ICU (most botulism babies do), and that she's ultimately going to be fine.
Thanks for asking after her! I've been telling her all about her new mommies and daddies, and when I asked if she's excited to cast her first Survivor vote some time soon, she didn't say no!
Do you want to dance while also thinking about all the ways you've failed as a human?
UPCOMING SHOWS 11/21 - Caribou @ Avant Gardner 11/23 - LCD Soundsystem @ Knockdown Center 11/25 - TV on the Radio @ Webster Hall 12/5 - LCD Soundsystem @ Knockdown Center 12/7 - LCD Soundsystem @ Knockdown Center 12/14 - LCD Soundsystem @ Knockdown Center
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so so glad to see y'all got it diagnosed and medicine treatment started!
