Joon is doing really great. She's walking almost normally now, she's pretty much back to how she was before, except she's still not talking. She had a few words, but she stopped saying those several days ago. Right now she's babbling like Penelope. We should be going home Monday. They were going to transfer her down to the rehab floor for a couple of weeks of intensive therapy, but now she doesn't need it anymore. All she needs is the speech therapy. They're going to do a blood cell count just to make sure she's good to go. They've been preparing us for discharge, setting up appointments and getting speech therapy set up for us. They're teaching us how to care for her PICC line, doing things like drawing up saline, flushing the line and changing the caps.
Penny is getting so big. She's sleeping pretty well now, we just have to swaddle her. She wants to stand all the time. Whenever her feet touch anything, she pushes off to stand. Her two teeth are still right below the surface of her gums. They've been there for more than a month, I don't know what's taking them so long. But Joon was teething for two months before her first teeth came in.
Joon is so sweet to Penny. She's always trying to give her toys and things. She likes to put her little animals on top of her, or try to get her to hold them. Today she put a bunch of cookie crumbs on her. She touches her so gently and carefully, and she's so bashful about it.
Saturday, July 31, 2010
Sunday, July 25, 2010
Getting better.
Joon walked today! She keeps trying to climb down out of the bed all the time. Sometimes she's not allowed to because she's hooked up to various things that we can't move. But whenever possible, we encourage her to get out of bed. Now, she's able to climb down and stay on her feet and easily cruise along the side of the bed while holding on. Then she voluntarily let go, and walked a few steps over to the chair, then kept walking back and forth between the furniture. She's still wobbly, but she does it! So exciting!
So right now, she's doing great in everything, except for talking and drinking. She just doesn't want to drink at all. Today, she actually took several sips of juice, I think it was about half of a juice box, so about two ounces. This is the first time she's drank anything in three weeks! But that was this morning, and she's been refusing again since then.
She's still not talking. She was saying a few things, but now the past couple of days she doesn't want to talk. She is finally getting pretty consistent with nodding or shaking her head for yes and no, and we're working on sign language. She used to sign a lot, but then she stopped signing after she started talking, so she doesn't remember any signs, and I don't remember much either.
Today the doctors said Joon may be able to move down to the rehab floor as early as tomorrow! They want her to be down there for intensive therapy for a while, probably about two weeks. They have outpatient PT, OT, and speech therapy, but only 3 times a week. She's going to need it three times a day, seven days a week, so she'll have to stay here for that.
So right now, she's doing great in everything, except for talking and drinking. She just doesn't want to drink at all. Today, she actually took several sips of juice, I think it was about half of a juice box, so about two ounces. This is the first time she's drank anything in three weeks! But that was this morning, and she's been refusing again since then.
She's still not talking. She was saying a few things, but now the past couple of days she doesn't want to talk. She is finally getting pretty consistent with nodding or shaking her head for yes and no, and we're working on sign language. She used to sign a lot, but then she stopped signing after she started talking, so she doesn't remember any signs, and I don't remember much either.
Today the doctors said Joon may be able to move down to the rehab floor as early as tomorrow! They want her to be down there for intensive therapy for a while, probably about two weeks. They have outpatient PT, OT, and speech therapy, but only 3 times a week. She's going to need it three times a day, seven days a week, so she'll have to stay here for that.
Saturday, July 24, 2010
Presents.
Joon received a package full of toys from an online friend and her bbgurls. She loves them, especially this yellow monster that makes noise when you throw it or hit it. It's great because she's throwing it around and actually crawling to go pick it up!
Thanks so much, Megan! <3
Thanks so much, Megan! <3
Friday, July 23, 2010
The last few days.
Tuesday had some goods and some bads.
Good: They are pretty confident Joon's condition isn't caused by anything contagious, so she's off of precautions, and we got the all-clear to take her out of the room. We put her in the wheelchair, and took her around the floor. We went to the end of the hall, where the walls are all covered in windows, and Joon looked out the windows.
Bad: She had four seizures. They've been trying to wean her off of one of her seizure meds, and it looks like that's not working out well. When she has her seizures, she still functions normally, but her eyes just bounce around. Sometimes her eyebrows bounce too. But everything else is normal. She still has purposeful movement, and she can vocalize. So they're called complex partial seizures.
Good: We had a nice visit from some friends. Unfortunately, Joon wasn't really interested in playing with them, probably because she wasn't feeling good, but I enjoyed seeing them.
Bad: Joon vomited twice. She didn't want to eat much of her dinner, and seemed like she didn't feel good. Then she threw up what little she had eaten, and seemed happier after that. Then when we were giving her the evening meds, she threw up again. She hasn't done it again since then, so we think it was probably just something she ate, and not another illness.
Wednesday was mostly good. They started the IVIG treatment, and I think it's helping.
The physical therapist and occupational therapist took us down to the therapy gym. Joon was really not in the mood at first, but she slowly came around, and she eventually played with this ball with different animal buttons on it.
Joon had three seizures. They were the complex partial seizures again. They decided to hook her up to the EEG again, for another 24 hours, to see if they could capture one of the seizrues so they could see what was going on.
My mom came up, and brought a lot of Joon's toys. She stayed with Joon for the night, and Andrew and I went home. We watched last week's new Futurama, and I had a hard lemonade and it made me drunk, lol.
We came back up here yesterday. We had a lot of delays, so we didn't get here until the afternoon.
We had to give up our goldfish. We have a 125 gallon tank, which had 9 fancy goldfish (mostly orandas). While Joon has been sick, we've been staying in the hospital and only coming home about once a week, for a night at a time. My mom has been feeding them, but we haven't had time to do anything else with them. The aquariums haven't been cleaned in about a month. When we went home this time, we were down two fish. We know we're going to be at the hospital for a few more weeks, so the rest of the fish wouldn't have very good chances. So we decided it would be in their best interest to be elsewhere. It sucks because we had some really nice goldfish, but it had to be done. We kept Joon's goldfish, and put him into the 40 gallon, and moved the turtles into the 125.
Joon spent the entire day playing with my mom and the toys she brought from home. She was in a much better mood than she had been during the time she's been sick. She walked a few steps while holding onto the bed. While she was sitting on the couch, she tried to get into a standing position. And she said "mouth" and "hey."
She had three seizures, and they were longer than the previous ones had been. She finished her EEG, and they removed the electrodes. The oil they use to remove the electrodes left her hair all nasty, and her hair is tangled from being wrapped up for 24 hours. So we're going to have to wash her hair in a basin again. But I forgot to bring her goggles and the shampoo she likes from home. So hopefully my mom will bring them and we'll be able to do that today.
Since Joon's contact precautions have been lifted, there's been a different dog trying to visit her every day. The hospital has a Prescription Pet Program, where volunteers bring their well-mannered dogs to visit the kids. It's a great program, because it does a lot to help raise the kids' spirits. Unfortunately, they've been showing up when Joon is not in a good mood, so she hasn't wanted to play with the dogs so far. But each dog has business cards with their picture, so we've got a collection of three doggy business cards.
Joon received a gift of a dozen balloons and a bear, from some mysterious online friends! She loved them!
Good: They are pretty confident Joon's condition isn't caused by anything contagious, so she's off of precautions, and we got the all-clear to take her out of the room. We put her in the wheelchair, and took her around the floor. We went to the end of the hall, where the walls are all covered in windows, and Joon looked out the windows.
Bad: She had four seizures. They've been trying to wean her off of one of her seizure meds, and it looks like that's not working out well. When she has her seizures, she still functions normally, but her eyes just bounce around. Sometimes her eyebrows bounce too. But everything else is normal. She still has purposeful movement, and she can vocalize. So they're called complex partial seizures.
Good: We had a nice visit from some friends. Unfortunately, Joon wasn't really interested in playing with them, probably because she wasn't feeling good, but I enjoyed seeing them.
Bad: Joon vomited twice. She didn't want to eat much of her dinner, and seemed like she didn't feel good. Then she threw up what little she had eaten, and seemed happier after that. Then when we were giving her the evening meds, she threw up again. She hasn't done it again since then, so we think it was probably just something she ate, and not another illness.
Wednesday was mostly good. They started the IVIG treatment, and I think it's helping.
The physical therapist and occupational therapist took us down to the therapy gym. Joon was really not in the mood at first, but she slowly came around, and she eventually played with this ball with different animal buttons on it.
Joon had three seizures. They were the complex partial seizures again. They decided to hook her up to the EEG again, for another 24 hours, to see if they could capture one of the seizrues so they could see what was going on.
My mom came up, and brought a lot of Joon's toys. She stayed with Joon for the night, and Andrew and I went home. We watched last week's new Futurama, and I had a hard lemonade and it made me drunk, lol.
We came back up here yesterday. We had a lot of delays, so we didn't get here until the afternoon.
We had to give up our goldfish. We have a 125 gallon tank, which had 9 fancy goldfish (mostly orandas). While Joon has been sick, we've been staying in the hospital and only coming home about once a week, for a night at a time. My mom has been feeding them, but we haven't had time to do anything else with them. The aquariums haven't been cleaned in about a month. When we went home this time, we were down two fish. We know we're going to be at the hospital for a few more weeks, so the rest of the fish wouldn't have very good chances. So we decided it would be in their best interest to be elsewhere. It sucks because we had some really nice goldfish, but it had to be done. We kept Joon's goldfish, and put him into the 40 gallon, and moved the turtles into the 125.
Joon spent the entire day playing with my mom and the toys she brought from home. She was in a much better mood than she had been during the time she's been sick. She walked a few steps while holding onto the bed. While she was sitting on the couch, she tried to get into a standing position. And she said "mouth" and "hey."
She had three seizures, and they were longer than the previous ones had been. She finished her EEG, and they removed the electrodes. The oil they use to remove the electrodes left her hair all nasty, and her hair is tangled from being wrapped up for 24 hours. So we're going to have to wash her hair in a basin again. But I forgot to bring her goggles and the shampoo she likes from home. So hopefully my mom will bring them and we'll be able to do that today.
Since Joon's contact precautions have been lifted, there's been a different dog trying to visit her every day. The hospital has a Prescription Pet Program, where volunteers bring their well-mannered dogs to visit the kids. It's a great program, because it does a lot to help raise the kids' spirits. Unfortunately, they've been showing up when Joon is not in a good mood, so she hasn't wanted to play with the dogs so far. But each dog has business cards with their picture, so we've got a collection of three doggy business cards.
Joon received a gift of a dozen balloons and a bear, from some mysterious online friends! She loved them!
Monday, July 19, 2010
Fast forward.
Today has left me feeling optimistic.
Joon started out in a bad mood. She didn't want to cooperate with her therapists, and she was very fussy. But then we opened the window shade, and took her over to the window. We sat on the fold out couch that we've been sleeping on, and looked out the window.
We played on the couch for a while, and then Joon started trying to climb off the bed. She turned over and swung her legs over the side of the bed, then lowered herself to her feet.
She was all wobbly and leaned on the couch, but then she got her legs straightened out under her, she turned around, and even let go for a few seconds.
It was awesome.
And then I put down the tumbling mat the physical therapist brought yesterday, and Joon and I played on the floor for a long time. She rolled around and did all sorts of things. It was a huge improvement over the past few days.
Joon is still not drinking, and we need to find out why, and figure out how to get her drink. The physical therapist watched her eat breakfast, and then she asked someone from the swallow team to come in and watch her eat lunch. They were talking about doing a swallow study, which would involve taking her down to radiology again and doing an x-ray video while she's eating and drinking, but they decided to just do an informal study, and just watch her eat. The woman from the swallow team said it seems like the liquid just comes up too quickly through the straw, and she gets too much and gets overwhelmed by it, and that makes her scared to try to drink. So they gave us some thickener to add to her drinks, and we just have to keep offering her liquids and she should eventually drink.
Right now, the neurologists are no longer sure it's ADEM, because of the way she's been responding to the treatment. They're saying it may be NMDA encephalitis. They tested for it, but it'll take weeks to get the results. But the treatment is the same in the beginning, just the steroids and then IVIG, and then if those didn't work, another medication. But that would wait until we get the test results. So right now, we're continuing with the previous plan.
Joon started out in a bad mood. She didn't want to cooperate with her therapists, and she was very fussy. But then we opened the window shade, and took her over to the window. We sat on the fold out couch that we've been sleeping on, and looked out the window.
We played on the couch for a while, and then Joon started trying to climb off the bed. She turned over and swung her legs over the side of the bed, then lowered herself to her feet.
She was all wobbly and leaned on the couch, but then she got her legs straightened out under her, she turned around, and even let go for a few seconds.
It was awesome.
And then I put down the tumbling mat the physical therapist brought yesterday, and Joon and I played on the floor for a long time. She rolled around and did all sorts of things. It was a huge improvement over the past few days.
Joon is still not drinking, and we need to find out why, and figure out how to get her drink. The physical therapist watched her eat breakfast, and then she asked someone from the swallow team to come in and watch her eat lunch. They were talking about doing a swallow study, which would involve taking her down to radiology again and doing an x-ray video while she's eating and drinking, but they decided to just do an informal study, and just watch her eat. The woman from the swallow team said it seems like the liquid just comes up too quickly through the straw, and she gets too much and gets overwhelmed by it, and that makes her scared to try to drink. So they gave us some thickener to add to her drinks, and we just have to keep offering her liquids and she should eventually drink.
Right now, the neurologists are no longer sure it's ADEM, because of the way she's been responding to the treatment. They're saying it may be NMDA encephalitis. They tested for it, but it'll take weeks to get the results. But the treatment is the same in the beginning, just the steroids and then IVIG, and then if those didn't work, another medication. But that would wait until we get the test results. So right now, we're continuing with the previous plan.
Sunday, July 18, 2010
Worry.
Joon's condition has remained unchanged over the past few days. She has improved a lot in the past week and a half, but she's still nowhere near where she was before. I'd say she's on the level of a 9 month old right now. She can sit up unassisted for short periods of time, but she can't stand without support. She can now roll over and crawl a little bit. She's eating well again, but she still can't drink. The only thing she can say right now is "Yeah."
Before she got sick, she used to be quite advanced in her speech. She had started talking early, and quickly had a very large vocabulary. She loved talking, and would spend all day chattering away, all the time. She'd tell everyone long stories about things she had done, and she could spend twenty minutes telling you all about going for a walk around the block. She'd make up fabulous stories about her toy animals, and make up dialog for them. She talked for hours and hours every day, and now, all she can say is "Yeah."
A few days ago, I was watching some videos of Joon just being her normal self before she got sick. She was talking and singing, running and jumping. Andrew said "So she's never going to be like that again?" I told him I don't know, the doctors here are really great, and I'm sure they'll be able to help her. But I wasn't sure. For a long time, I thought she'd be back to normal any day. I was confident that this would just go away. But now, I don't know. Most of the time, probably 90% of the time, I think she'll be okay. But the rest of the time, I'm scared. I'm terrified that she's recovered as much as she's going to, and this will be it.
When I was reading about ADEM, some things said she had a good outlook, and some things made it seem more negative. Overall, I felt like she would probably have a good prognosis, and I was feeling okay about this.
I asked the doctor today what he thought of her long-term prognosis. He said he doesn't know, she might make a full recovery, she might recover half of what she lost, or she might not recover any more at all. He said each possibility is equally likely.
I'm having a hard time keeping positive about it. It's all just so uncertain. We have no way of predicting how she's going to do. She could be like this for the rest of her life.
I have a few videos of her that were recorded in May and June, and some from the past week.
This one was from May 15, right after Penelope was born. Joon was jumping on the trampoline, then she "read" a book to Penny, making up the words as she went along. Then she sang Penny her own version of Hush Little Baby, promising that Grandma will buy her lots of things, like a balloon, a whale, and a watermelon.
This was from June, and she was talking about The Wiggles, and what each one does, Anthony eats, Murray plays music, Jeff sleeps, etc. We talk about the "Where's Jeff?" song, which talks about places Jeff sleeps. Then she talks about the birds eating dragonflies.
The next two videos show what Joon is like now. The first video is of her relearning to eat, and the second is of her playing with her dad. They both show how her motor skills are impaired, and she can't talk.
It just breaks my heart to see the huge difference. Watching these videos and thinking about how she was before, I miss my little girl, even though she's right here next to me.
Before she got sick, she used to be quite advanced in her speech. She had started talking early, and quickly had a very large vocabulary. She loved talking, and would spend all day chattering away, all the time. She'd tell everyone long stories about things she had done, and she could spend twenty minutes telling you all about going for a walk around the block. She'd make up fabulous stories about her toy animals, and make up dialog for them. She talked for hours and hours every day, and now, all she can say is "Yeah."
A few days ago, I was watching some videos of Joon just being her normal self before she got sick. She was talking and singing, running and jumping. Andrew said "So she's never going to be like that again?" I told him I don't know, the doctors here are really great, and I'm sure they'll be able to help her. But I wasn't sure. For a long time, I thought she'd be back to normal any day. I was confident that this would just go away. But now, I don't know. Most of the time, probably 90% of the time, I think she'll be okay. But the rest of the time, I'm scared. I'm terrified that she's recovered as much as she's going to, and this will be it.
When I was reading about ADEM, some things said she had a good outlook, and some things made it seem more negative. Overall, I felt like she would probably have a good prognosis, and I was feeling okay about this.
I asked the doctor today what he thought of her long-term prognosis. He said he doesn't know, she might make a full recovery, she might recover half of what she lost, or she might not recover any more at all. He said each possibility is equally likely.
I'm having a hard time keeping positive about it. It's all just so uncertain. We have no way of predicting how she's going to do. She could be like this for the rest of her life.
I have a few videos of her that were recorded in May and June, and some from the past week.
This one was from May 15, right after Penelope was born. Joon was jumping on the trampoline, then she "read" a book to Penny, making up the words as she went along. Then she sang Penny her own version of Hush Little Baby, promising that Grandma will buy her lots of things, like a balloon, a whale, and a watermelon.
This was from June, and she was talking about The Wiggles, and what each one does, Anthony eats, Murray plays music, Jeff sleeps, etc. We talk about the "Where's Jeff?" song, which talks about places Jeff sleeps. Then she talks about the birds eating dragonflies.
The next two videos show what Joon is like now. The first video is of her relearning to eat, and the second is of her playing with her dad. They both show how her motor skills are impaired, and she can't talk.
It just breaks my heart to see the huge difference. Watching these videos and thinking about how she was before, I miss my little girl, even though she's right here next to me.
Saturday, July 17, 2010
Diagnosis and prognosis.
Joon is not doing as good as she was two days ago. She's still good, though. She's just not talking as much as she was that day. She mostly just says "yeah" and that's pretty much it. It seems like she tries to say "no", but just gets the N sound. The doctors said it's normal for her progress to go up and down a bunch of times over the first couple of weeks.
She's had no appetite today. She ate a good amount of breakfast, but then no lunch, and only a chicken nugget for dinner. We think it's probably due to her seizure medication. It's hard on the stomach, and so they're also giving her zantac to help out with that, but maybe it's not helping enough. I'm pretty uncomfortable with the amount of medications she's on, but it's supposed to be really short-term, so I think I can deal with it. If the doctors want to continue the meds for longer, I'll want to discuss other options.
Today the neurologists said it looks like the swelling is probably more global rather than localized to the cerebellum. So they're calling it Acute disseminated encephalomyelitis (ADEM) now instead of Cerebellitis. It's similar to Multiple Sclerosis, but it's caused by some sort of virus getting into her brain. The average recovery time is 1-6 months. 50 to 75% of cases have a full recovery, and up to 70 to 90% recover with some minor disability.
The standard treatment is to start with high doses of IV steroids, and then lower doses orally for 3-6 weeks. Also, high doses of IVIG, which is intravenous immunoglobulin, which is where they take antibodies from over 1,000 people, and mix them together, and inject them into Joon. This is supposed to be the best course of treatment, and this is what we'll be doing. I think she should have a pretty good prognosis with this treatment.
The prognosis is generally better in kids that are older, in one study, younger kids ended up with a slightly lower IQ, and behavioural problems. But the prognosis is also better in cases that present with fever, and Joon has had a fever. So I'm going to stay positive that she'll have a full and speedy recovery.
She's had no appetite today. She ate a good amount of breakfast, but then no lunch, and only a chicken nugget for dinner. We think it's probably due to her seizure medication. It's hard on the stomach, and so they're also giving her zantac to help out with that, but maybe it's not helping enough. I'm pretty uncomfortable with the amount of medications she's on, but it's supposed to be really short-term, so I think I can deal with it. If the doctors want to continue the meds for longer, I'll want to discuss other options.
Today the neurologists said it looks like the swelling is probably more global rather than localized to the cerebellum. So they're calling it Acute disseminated encephalomyelitis (ADEM) now instead of Cerebellitis. It's similar to Multiple Sclerosis, but it's caused by some sort of virus getting into her brain. The average recovery time is 1-6 months. 50 to 75% of cases have a full recovery, and up to 70 to 90% recover with some minor disability.
The standard treatment is to start with high doses of IV steroids, and then lower doses orally for 3-6 weeks. Also, high doses of IVIG, which is intravenous immunoglobulin, which is where they take antibodies from over 1,000 people, and mix them together, and inject them into Joon. This is supposed to be the best course of treatment, and this is what we'll be doing. I think she should have a pretty good prognosis with this treatment.
The prognosis is generally better in kids that are older, in one study, younger kids ended up with a slightly lower IQ, and behavioural problems. But the prognosis is also better in cases that present with fever, and Joon has had a fever. So I'm going to stay positive that she'll have a full and speedy recovery.
Friday, July 16, 2010
Two months
Yesterday was a great day for Joon. She made huge advances in her recovery. Unfortunately I'm still here at home until after Penelope's appointment tomorrow. But I did get to see her on webcam.
Andrew went back up there in the morning. He talked to the neurologist again, and looked at the MRI scans. The MRI showed swelling in her cerebellum, which is shat caused her to not be able to talk, eat, stand, or anything else. They decided to give her steroids for a few days to help with the swelling. While the doctor was there, Joon had another seizure. Her eyes were bouncing up and down, and her eyebrows twitching. Later in the day, she had another seizure that we noticed.
After lunch, Joon's recovery started progressing in fast forward. She started sitting up on her own, and playing with toys. Then she started TALKING. She's talking now!
Andrew and I set up our webcams and I got to see Joon playing. She looked at me and waved and talked. I showed her the cats, and she tried to say Sagwa.
Penelope turned two months old, and I took her comparison photo on the blanket I made for her.
Two months:
Penelope had her two month checkup today. She's in perfect condition. She weighs 11 pounds and 2 ounces, and she's 59 centimeters long. Her head circumference is 38.5 centimeters. She's met all the expected milestones.
We headed back up to Denver after Penelope's appointment. Penny slept the whole way there. Joon is still doing good, but not as good as she was yesterday. She wanted pizza for dinner, but when it arrived, she just wanted to eat french fries. She kept trying to climb down out of the bed, even though she can't really stand on her own yet. She had another EEG today, just for an hour, to see how her brain activity has improved in the last couple of days. She's sleeping now, and hopefully she'll sleep through the night like she did last night.
Andrew went back up there in the morning. He talked to the neurologist again, and looked at the MRI scans. The MRI showed swelling in her cerebellum, which is shat caused her to not be able to talk, eat, stand, or anything else. They decided to give her steroids for a few days to help with the swelling. While the doctor was there, Joon had another seizure. Her eyes were bouncing up and down, and her eyebrows twitching. Later in the day, she had another seizure that we noticed.
After lunch, Joon's recovery started progressing in fast forward. She started sitting up on her own, and playing with toys. Then she started TALKING. She's talking now!
Andrew and I set up our webcams and I got to see Joon playing. She looked at me and waved and talked. I showed her the cats, and she tried to say Sagwa.
Penelope turned two months old, and I took her comparison photo on the blanket I made for her.
Two months:
Penelope had her two month checkup today. She's in perfect condition. She weighs 11 pounds and 2 ounces, and she's 59 centimeters long. Her head circumference is 38.5 centimeters. She's met all the expected milestones.
We headed back up to Denver after Penelope's appointment. Penny slept the whole way there. Joon is still doing good, but not as good as she was yesterday. She wanted pizza for dinner, but when it arrived, she just wanted to eat french fries. She kept trying to climb down out of the bed, even though she can't really stand on her own yet. She had another EEG today, just for an hour, to see how her brain activity has improved in the last couple of days. She's sleeping now, and hopefully she'll sleep through the night like she did last night.
Thursday, July 15, 2010
Update.
We haven't been getting much sleep. Last night, Joon had her EEG. She wasn't very happy about having the electrodes attached to her head. She kept trying to pull them off, and then cried when I told her not to. Then she got up at 4am. I changed her, then fed her, then Penny woke up and I changed her and fed her. Then Joon started freaking out about the electrodes again, and she woke Penny back up. After a while we gave up on going back to sleep and just went and grabbed a coffee instead.
They took more blood for more lab tests. Then they told us she couldn't eat or nurse until after her MRI, which was scheduled for 3:30 pm. The physical therapist and occupational therapist came in and worked with her for about half an hour. She was really not in the mood, probably partially because she was hungry. Then the speech therapist came in and worked with her. Joon did a lot better with her. They played with a toy, then the therapist brought out these two little voice recorders things. You can use them to record a word or phrase, and then Joon just has to hit a big button to get it to talk. She started working on teaching Joon to push the button, and left one of the recorders with us. I recorded "No." and told Joon that if we're doing something she doesn't want to do, she can push the button and we'll know to stop.
The neurology team came in and checked her out again, and then the infectious diseases team also came in and examined her and asked a bunch of questions. The head neurologist told us about the EEG results. He said Joon had one little seizure, but we hadn't even realized it had happened.
They took the EEG electrodes off, and her hair was all full of glue, and the oil they had used to unstick the electrodes. A couple of nurses helped me bathe her. They put some water in the tub, and then I sat her on the side and put her feet in the water. She was excited, and immediately stood up. She was voluntarily bearing weight on her legs, but she still couldn't balance, so I had to hold her up. She sat in the tub for a couple of minutes, but then she started freaking out. I had to pick her up, and they used a washcloth on her while I held her. Then I had to sit on her bed and hold her in my lap while they washed her hair with a basin of water under her head.
A little while later, they took us down to radiology. Andrew took Joon back into the MRI area and stayed with her while they sedated her. They did another MRI (her third), and then while she was sedated they did her second spinal tap. While we were waiting for her, my mom arrived. She hadn't been able to get up to Denver until today, because she was working. She had off today, so she came up. Joon woke up, and we went back to be with her. We stayed in the recovery room for about half an hour, then went back to our room.
We all hung out for a while, and ate spaghetti that my mom made for dinner. Then the metabolic team came up and talked to us. They said today's MRI looked normal, though the one done last week had a couple of spots. That's a good sign. They said they've done a bunch of tests for metabolic problems, and the ones they've gotten results on so far are all good. Some of the other tests will take longer, possibly as long as three months.
Andrew and I packed up some of our stuff, and then we came home, along with Penny. Andrew is going back early tomorrow morning, but Penny and I are staying here a little longer. I have an important appointment early in the morning, and then Penny has her two-month appointment the next day. So we're going to stay here until after her appointment. I miss Joon so bad already, and feel awful for being away from her. I've never been away from her for this long before. :(
They took more blood for more lab tests. Then they told us she couldn't eat or nurse until after her MRI, which was scheduled for 3:30 pm. The physical therapist and occupational therapist came in and worked with her for about half an hour. She was really not in the mood, probably partially because she was hungry. Then the speech therapist came in and worked with her. Joon did a lot better with her. They played with a toy, then the therapist brought out these two little voice recorders things. You can use them to record a word or phrase, and then Joon just has to hit a big button to get it to talk. She started working on teaching Joon to push the button, and left one of the recorders with us. I recorded "No." and told Joon that if we're doing something she doesn't want to do, she can push the button and we'll know to stop.
The neurology team came in and checked her out again, and then the infectious diseases team also came in and examined her and asked a bunch of questions. The head neurologist told us about the EEG results. He said Joon had one little seizure, but we hadn't even realized it had happened.
They took the EEG electrodes off, and her hair was all full of glue, and the oil they had used to unstick the electrodes. A couple of nurses helped me bathe her. They put some water in the tub, and then I sat her on the side and put her feet in the water. She was excited, and immediately stood up. She was voluntarily bearing weight on her legs, but she still couldn't balance, so I had to hold her up. She sat in the tub for a couple of minutes, but then she started freaking out. I had to pick her up, and they used a washcloth on her while I held her. Then I had to sit on her bed and hold her in my lap while they washed her hair with a basin of water under her head.
A little while later, they took us down to radiology. Andrew took Joon back into the MRI area and stayed with her while they sedated her. They did another MRI (her third), and then while she was sedated they did her second spinal tap. While we were waiting for her, my mom arrived. She hadn't been able to get up to Denver until today, because she was working. She had off today, so she came up. Joon woke up, and we went back to be with her. We stayed in the recovery room for about half an hour, then went back to our room.
We all hung out for a while, and ate spaghetti that my mom made for dinner. Then the metabolic team came up and talked to us. They said today's MRI looked normal, though the one done last week had a couple of spots. That's a good sign. They said they've done a bunch of tests for metabolic problems, and the ones they've gotten results on so far are all good. Some of the other tests will take longer, possibly as long as three months.
Andrew and I packed up some of our stuff, and then we came home, along with Penny. Andrew is going back early tomorrow morning, but Penny and I are staying here a little longer. I have an important appointment early in the morning, and then Penny has her two-month appointment the next day. So we're going to stay here until after her appointment. I miss Joon so bad already, and feel awful for being away from her. I've never been away from her for this long before. :(
Tuesday, July 13, 2010
Children's Hospital
The Children's Hospital is great. I'm so glad we got her here, I just wish we would have brought her here in the beginning. It's huge and feels so cheery and cozy and clean. They're incredibly accommodating, they give us everything we need, and are constantly offering to get things for us. There's a kitchen right across the hall, with a fridge full of free snacks and drinks, microwave, ice machine, etc. which we can use at any time. There's a lobby with a playroom with tons of activities for kids of all ages. We always see parents walking around the halls with their sick kids, the staff encourages us to get Joon up out of bed and do things with her. Each floor has a lactation room, which has a really nice pump, and they gave me a set of pump parts to use with the pump. And they have a daycare for siblings, which is free, so I would be able to pump some milk with Penny and take her to the daycare so I can have some time to work with Joon without distractions, and if Penny needs me, I'm just two minutes away.
The people here seem really knowledgeable. Everyone has been asking tons of questions and paying attention to what we say. They actually examine Joon, instead of just briefly looking over a few things. They observe her, and seem to communicate with each other about what's going on. Instead of just having one doctor on call, we always have an attending, a resident, an intern, and a medical student. We have an entire team of neurologists working on our case. It's awesome. We've told her entire case history to about a million people so far. They actually do rounds the way you see on shows like Scrubs. And when the nurses change shifts, the nurse that's leaving and the new nurse come into our room, and the old nurses briefs the new nurse on what's happening, while we're there, so we can make sure the new nurse knows everything.
When we arrived yesterday, a med student took her case history, and asked a bunch of questions. Then we met a lot of other doctors. They talked to us about what the plan was at that point, basically that they would all get together and go over her records and the info we gave them, discuss everything, and come up with a game plan. They took some blood for lab work, and said they'd most likely be doing another MRI and spinal tap.
This morning, after the doctors had a chance to discuss everything, they took some more blood to test for some more unusual things. Then we took Joon down to radiology, and she had a more in-depth MRI, to look at some things that weren't checked before. That came back normal. But they told us they looked at the MRI ordered by Evans hospital, and there were some spots on it. The bad doctor at Evans had said that that MRI was normal. We don't know yet what those spots mean, but they're doing more testing to find out.
At some point the entire neurology team came in. I was laying there nursing her, and suddenly five or six neurologists surrounded us and started testing all her reflexes, looking in her eyes, measuring her head, asking weird questions. They said they're going to be spending a lot of time thinking about her case, and test for lots of really rare things, and should be able to figure out what's wrong within a couple of days, and even if they don't they'd like to start treatment soon.
We were visited by a physical therapist and an occupational therapist. They worked with Joon, trying to get her to do different things to show them how all her parts were working. They tried to get her to eat and drink, but she wasn't in the mood. They used her Ariel doll, having Ariel do things they wanted Joon to do. They brought in a little wheelchair and got her into it, and when they left, they left the chair with us so we can walk her around. They said they'd be coming back on a regular basis to work with her.
While Joon was still in the chair, I got some Oreos, and offered her one. I held my hand out flat with the cookie laying on my palm, and she swiped at it and was able to grab it and get it to her mouth. This is the first that she was able to feed herself, before this we've had to put food into her mouth. When she bit the oreo, she wasn't able to keep holding onto the rest of it, she just let it fall. She ended up eating almost two oreos, and I filmed some of it and uploaded the video.
We went for a walk, and took Joon all around this floor. She looked out the big windows and checked out the trees and cars and whatnot. We went to the playroom, and the woman there picked out a few toys and tried to get Joon to play with them, but she wasn't interested.
When we came back to the room, the speech therapist came in. She brought a shape sorting toy, and she and Joon played with it together. Joon was definitely still able to match up the colors and shapes, but she had a lot of trouble getting the pieces to the holes. She was just banging the pieces against the top, not really getting near the right hole most of the time. The therapist asked a lot of questions and did a did a bunch of stuff with Joon, and she said she's going to be working with her every day. She said a lot of Joon's crying is due to her frustration with being completely unable to communicate. She used to talk non-stop, and would tell stories that went on for more than ten minutes. And now she can't say a single word. She said that because it's easier for Joon to control her gross movements than the finer movements required for speech, she's going to bring some machine that Joon can use to talk for her.
Joon is hooked up to a bunch of electrodes right now. They're doing an EEG test overnight, so she's sleeping with 27 electrodes attached to her head. It's pretty scary, I keep looking at the screen and she's having a ton of "spikes" (1-3 each minute) and a lot of "events" too. Someone on the internets said these are actually seizures with no outwards signs of seizure. But I'm going to stop listening to Dr. Google, and not worry about it until we talk to a real doctor about it in the morning. This is going to be a rough night, Joon just woke up and took off the gauze that was wrapped aroung her head, and keeps trying to pull the electrodes off.
The people here seem really knowledgeable. Everyone has been asking tons of questions and paying attention to what we say. They actually examine Joon, instead of just briefly looking over a few things. They observe her, and seem to communicate with each other about what's going on. Instead of just having one doctor on call, we always have an attending, a resident, an intern, and a medical student. We have an entire team of neurologists working on our case. It's awesome. We've told her entire case history to about a million people so far. They actually do rounds the way you see on shows like Scrubs. And when the nurses change shifts, the nurse that's leaving and the new nurse come into our room, and the old nurses briefs the new nurse on what's happening, while we're there, so we can make sure the new nurse knows everything.
When we arrived yesterday, a med student took her case history, and asked a bunch of questions. Then we met a lot of other doctors. They talked to us about what the plan was at that point, basically that they would all get together and go over her records and the info we gave them, discuss everything, and come up with a game plan. They took some blood for lab work, and said they'd most likely be doing another MRI and spinal tap.
This morning, after the doctors had a chance to discuss everything, they took some more blood to test for some more unusual things. Then we took Joon down to radiology, and she had a more in-depth MRI, to look at some things that weren't checked before. That came back normal. But they told us they looked at the MRI ordered by Evans hospital, and there were some spots on it. The bad doctor at Evans had said that that MRI was normal. We don't know yet what those spots mean, but they're doing more testing to find out.
At some point the entire neurology team came in. I was laying there nursing her, and suddenly five or six neurologists surrounded us and started testing all her reflexes, looking in her eyes, measuring her head, asking weird questions. They said they're going to be spending a lot of time thinking about her case, and test for lots of really rare things, and should be able to figure out what's wrong within a couple of days, and even if they don't they'd like to start treatment soon.
We were visited by a physical therapist and an occupational therapist. They worked with Joon, trying to get her to do different things to show them how all her parts were working. They tried to get her to eat and drink, but she wasn't in the mood. They used her Ariel doll, having Ariel do things they wanted Joon to do. They brought in a little wheelchair and got her into it, and when they left, they left the chair with us so we can walk her around. They said they'd be coming back on a regular basis to work with her.
While Joon was still in the chair, I got some Oreos, and offered her one. I held my hand out flat with the cookie laying on my palm, and she swiped at it and was able to grab it and get it to her mouth. This is the first that she was able to feed herself, before this we've had to put food into her mouth. When she bit the oreo, she wasn't able to keep holding onto the rest of it, she just let it fall. She ended up eating almost two oreos, and I filmed some of it and uploaded the video.
We went for a walk, and took Joon all around this floor. She looked out the big windows and checked out the trees and cars and whatnot. We went to the playroom, and the woman there picked out a few toys and tried to get Joon to play with them, but she wasn't interested.
When we came back to the room, the speech therapist came in. She brought a shape sorting toy, and she and Joon played with it together. Joon was definitely still able to match up the colors and shapes, but she had a lot of trouble getting the pieces to the holes. She was just banging the pieces against the top, not really getting near the right hole most of the time. The therapist asked a lot of questions and did a did a bunch of stuff with Joon, and she said she's going to be working with her every day. She said a lot of Joon's crying is due to her frustration with being completely unable to communicate. She used to talk non-stop, and would tell stories that went on for more than ten minutes. And now she can't say a single word. She said that because it's easier for Joon to control her gross movements than the finer movements required for speech, she's going to bring some machine that Joon can use to talk for her.
Joon is hooked up to a bunch of electrodes right now. They're doing an EEG test overnight, so she's sleeping with 27 electrodes attached to her head. It's pretty scary, I keep looking at the screen and she's having a ton of "spikes" (1-3 each minute) and a lot of "events" too. Someone on the internets said these are actually seizures with no outwards signs of seizure. But I'm going to stop listening to Dr. Google, and not worry about it until we talk to a real doctor about it in the morning. This is going to be a rough night, Joon just woke up and took off the gauze that was wrapped aroung her head, and keeps trying to pull the electrodes off.
Monday, July 12, 2010
Videos.
Joon is quickly recovering. She has good and bad periods. During the good times, she's laughing, smiling, and starting to move around. In the first video, she's laughing about putting her feet on her food tray.
Sunday, July 11, 2010
Nurse Penny while Joon cries, nurse Joon while Penny cries, nurse Penny while Joon cries, nurse Joon while Penny cries, nurse Penny while Joon cries. Such is life.
I can't work out how to nurse them both together anymore. It was easy when Penny was smaller, but now she likes to kick Joon. I've tried having Joon lay across my lap and then have Penny in the football hold, but it didn't work. I even had my mom trying to hold Penny up to my breast in all sorts of positions, but we couldn't get any to work.
It would be easier if Joon wasn't so weak, but right now she is too sick to be able to sit beside me while nursing. Even having her in my lap is uncomfortable for her, so I almost always have to nurse her side-lying.
They usually don't need to nurse that often. They've just had bad timing recently, and both decide they need to at the same time. It mostly happens at night when they wake each other up and both need help getting to sleep. I'll get Penny to sleep, then while I'm trying to set her down, Joon's still crying and wakes Penny up again, and Penny starts crying again while I'm trying to settle Joon. They keep each other up and I have to keep going back and forth forever.
I can't work out how to nurse them both together anymore. It was easy when Penny was smaller, but now she likes to kick Joon. I've tried having Joon lay across my lap and then have Penny in the football hold, but it didn't work. I even had my mom trying to hold Penny up to my breast in all sorts of positions, but we couldn't get any to work.
It would be easier if Joon wasn't so weak, but right now she is too sick to be able to sit beside me while nursing. Even having her in my lap is uncomfortable for her, so I almost always have to nurse her side-lying.
They usually don't need to nurse that often. They've just had bad timing recently, and both decide they need to at the same time. It mostly happens at night when they wake each other up and both need help getting to sleep. I'll get Penny to sleep, then while I'm trying to set her down, Joon's still crying and wakes Penny up again, and Penny starts crying again while I'm trying to settle Joon. They keep each other up and I have to keep going back and forth forever.
Something we find funny during all of this:
Joon has to wear Pampers so they can weigh her output, and we are all so confused by them. I thought disposables were supposed to be easier and more convenient than cloth.
Saturday, July 10, 2010
First smiles.
After about an hour of nursing, she started smiling, and we even got a couple of laughs out of her!
quick update
Thanks so much to everyone who has helped. The support we've received has been amazing.
I will make a real update when I have a chance.
TLDR version:
We got a new doctor, he seems great so far. He's willing to transfer her, but now Memorial says they can't take her because they don't have their neurologist there on the weekends so they wouldn't be able to help her. They're supposed to take her on Monday. Meanwhile, we're okay with the new doctor.
Joon's condition seems to make a dramatic improvement each time I nurse her. She's becoming more aware, she even smiled today. And she started eating! She accepted a few bites of grilled cheese sandwich at lunch, and now she took 27 pieces of macaroni and cheese! It's so exciting!
I will make a real update when I have a chance.
TLDR version:
We got a new doctor, he seems great so far. He's willing to transfer her, but now Memorial says they can't take her because they don't have their neurologist there on the weekends so they wouldn't be able to help her. They're supposed to take her on Monday. Meanwhile, we're okay with the new doctor.
Joon's condition seems to make a dramatic improvement each time I nurse her. She's becoming more aware, she even smiled today. And she started eating! She accepted a few bites of grilled cheese sandwich at lunch, and now she took 27 pieces of macaroni and cheese! It's so exciting!
SHE ATE!
SHE ATE! She was nursing, and Andrew asked if she wanted some grilled cheese. She unlatched and looked at him. I held the sandwich to her lips and she latched onto it and sucked pieces off. It looks like she's relearning how to chew.
There's been a lot happening but no time to write. I've been staying with her overnight, Penny too. I'm nursing them almost all of the time, so it's hard to do anything else.
There's been a lot happening but no time to write. I've been staying with her overnight, Penny too. I'm nursing them almost all of the time, so it's hard to do anything else.
Friday, July 9, 2010
Update.
Several people said we need to get her out of Evans (an army hospital) and get her in Memorial (a civilian hospital). Well, we went to Memorial to do her MRI, because she had to be sedated. As soon as we got there, the nurse there said thank god I was still nursing her, and told me about a mama that was nursing her 3 year old with cancer. Everyone at Memorial was pretty appalled at the way she was being treated at Evans, and they immediately tried to help us get her transferred.
Unfortunately, the doctor at Evans (Dr. Williams) doesn't want to transfer her for some reason. I don't understand at all, because she was trying to send her home yesterday morning, even though she couldn't eat or drink, stand or sit or talk. Williams wanted to send her home and have us force feed her popsicles until she snaps out of it. At that point, we didn't know we could take her to another hospital, so we thought the only options were bringing her home and have her starve to death, or get them to keep her in Evans. So we fought and had them keep her. That was yesterday morning, and then last night when we were trying to transfer her to memorial, Williams didn't want to let her go. I don't fucking understand at all.
The Memorial staff said they'd have to call up Dr. Williams and i'd have to request to stay at Memorial. So we did that, and Dr. Williams started yelling at me, telling me that we can't do that, that we have to come back to Evans because Joon is her patient, and we are only at Memorial for the MRI and had to come back to Evans immediately. Williams said she wasnt going to let us leave, and we'd have to sign out Against Medecal Advice, which would make Tricare not cover anything, and we'd have to pay for the entire hospital stay, cat scan, mri, ambulance, etc, and it would cost us upwards of $50,000, and then Memorial wouldn't take her. I started crying and handed the phone to my mom, and she went off on Williams, and told her we were going to transfer because she was incompetant and was just going to let Joon die.
After that, Memorial said they couldn't do anything for us while Joon was still Dr. Williams patient. They said all we could do is go back to Evans, and then complain to higher-ups in the morning, and if that doesn't work then just keep escalating it, and call our congressman and/or the media. So we had to go back to Evans, and my husband has some of his officers raising hell. But Joon is still at Evans, and Dr. Williams is still her doctor. I asked if we can just refuse to see Williams, and request another doctor at Evans, and they said we'd have to pay if we do that.
When we got back to Evans, we talked to one of the nurses that had seemed to be more concerned about Joon. She acted like she was on our side, and said she understood and she'd make sure she was in our room when Dr. Williams came to talk to us. Dr. wIlliams came up, and she brought some Sergeant with her, obviously to be a witness as she said all the right things and made us look like bad parents. She lied and said that she had never said to stop breastfeeding, she kept saying it was great that I was nursing and getting some nourishment into her. It was all complete lies! And she kept saying that she was trying to do what's best for Joon, she said that all signs point to viral ataxia, but she "wasn't going to take it at face value, and that's why I'm doing all these tests, to rule out everything else." But the thing is, she wasn't doing tests until we insisted. She just immediately assumed it was a virus, and stuck with that, and didn't do anything for three days, then tried to discharge her yesterday, and when we wre like "WTF NO!" then she started with the cat scan, MRI and spinal tap. But now she has this witness to all of her lies, and I'm scared it's going to make it imposssible to fight her, because it looks like she didn't do anything wrong.
I don't know what to do. I'm so scared they're going to kill her or cause permanent damamge. It feels like they're holding her hostage, and it's going to cost us $50,000+ to get her out of there. I was all ready tio just leave Against Medical Advice, and then deal with the money problems later, but then she said that Memorial won't take her if we do that. So then she'd be stuck without a hospital, and she'd just die at home. So I don't know what to do. I'm just terrified, there seems like there's nothing we can do.
Some of the things people here suggested were encephalitis, meningitis, and lead poisoning. There were a couple of other ideas, but I couldn't remember them whne I was talking to the doctor, so I'm going to write them down and ask when I can.
The cat scan, MRI, and spinal tap they did today are suppposed to show if she has encephalitis or meningitis.
I looked up the lead poisoning (just on wiki, because that's all I could do on my phone), and it sounded exactly like what she has, including several symptoms I didn't mention here before: loss of appetite, abdominal pain, vomiting, weight loss, constipation, anemia, irritability, lethargy. She has all of those. And yet the doctors didn't even consider lead poisoning. Why? Because I didn't mention living in an old house. So they didn't consider it, and waited for us to bring it up, and then tried to dismiss it, and we pretty much had to force them to test for it, and they only agreed because "Well, I guess it couldn't hurt." Yeah, it can't fucking hurt for you to DO YOUR JOB.
We asked about doing the protein drip in the IV, and she said couldn't do that because they'd have to use a larger diameter needle. I'm going to see if they can do that, but I'm scared to have them do it at Evans, because they are really shitty at placing IVs, they always take several sticks to get one in, and they've ruined all the veins in her arms and hands. When they sent us to Memorial for the MRI, memorial staff had to put the IV in her foot. Thankfully, that one is still in, so the people at Evans didn't have to stick her again. But I don't know how long that'll last, and I don't want her to still be there when she needs a new one.
I desperately want to get her out of Evans before they kill her, I just don't know how to do this. Deos anyone have any advice.
Unfortunately, the doctor at Evans (Dr. Williams) doesn't want to transfer her for some reason. I don't understand at all, because she was trying to send her home yesterday morning, even though she couldn't eat or drink, stand or sit or talk. Williams wanted to send her home and have us force feed her popsicles until she snaps out of it. At that point, we didn't know we could take her to another hospital, so we thought the only options were bringing her home and have her starve to death, or get them to keep her in Evans. So we fought and had them keep her. That was yesterday morning, and then last night when we were trying to transfer her to memorial, Williams didn't want to let her go. I don't fucking understand at all.
The Memorial staff said they'd have to call up Dr. Williams and i'd have to request to stay at Memorial. So we did that, and Dr. Williams started yelling at me, telling me that we can't do that, that we have to come back to Evans because Joon is her patient, and we are only at Memorial for the MRI and had to come back to Evans immediately. Williams said she wasnt going to let us leave, and we'd have to sign out Against Medecal Advice, which would make Tricare not cover anything, and we'd have to pay for the entire hospital stay, cat scan, mri, ambulance, etc, and it would cost us upwards of $50,000, and then Memorial wouldn't take her. I started crying and handed the phone to my mom, and she went off on Williams, and told her we were going to transfer because she was incompetant and was just going to let Joon die.
After that, Memorial said they couldn't do anything for us while Joon was still Dr. Williams patient. They said all we could do is go back to Evans, and then complain to higher-ups in the morning, and if that doesn't work then just keep escalating it, and call our congressman and/or the media. So we had to go back to Evans, and my husband has some of his officers raising hell. But Joon is still at Evans, and Dr. Williams is still her doctor. I asked if we can just refuse to see Williams, and request another doctor at Evans, and they said we'd have to pay if we do that.
When we got back to Evans, we talked to one of the nurses that had seemed to be more concerned about Joon. She acted like she was on our side, and said she understood and she'd make sure she was in our room when Dr. Williams came to talk to us. Dr. wIlliams came up, and she brought some Sergeant with her, obviously to be a witness as she said all the right things and made us look like bad parents. She lied and said that she had never said to stop breastfeeding, she kept saying it was great that I was nursing and getting some nourishment into her. It was all complete lies! And she kept saying that she was trying to do what's best for Joon, she said that all signs point to viral ataxia, but she "wasn't going to take it at face value, and that's why I'm doing all these tests, to rule out everything else." But the thing is, she wasn't doing tests until we insisted. She just immediately assumed it was a virus, and stuck with that, and didn't do anything for three days, then tried to discharge her yesterday, and when we wre like "WTF NO!" then she started with the cat scan, MRI and spinal tap. But now she has this witness to all of her lies, and I'm scared it's going to make it imposssible to fight her, because it looks like she didn't do anything wrong.
I don't know what to do. I'm so scared they're going to kill her or cause permanent damamge. It feels like they're holding her hostage, and it's going to cost us $50,000+ to get her out of there. I was all ready tio just leave Against Medical Advice, and then deal with the money problems later, but then she said that Memorial won't take her if we do that. So then she'd be stuck without a hospital, and she'd just die at home. So I don't know what to do. I'm just terrified, there seems like there's nothing we can do.
Some of the things people here suggested were encephalitis, meningitis, and lead poisoning. There were a couple of other ideas, but I couldn't remember them whne I was talking to the doctor, so I'm going to write them down and ask when I can.
The cat scan, MRI, and spinal tap they did today are suppposed to show if she has encephalitis or meningitis.
I looked up the lead poisoning (just on wiki, because that's all I could do on my phone), and it sounded exactly like what she has, including several symptoms I didn't mention here before: loss of appetite, abdominal pain, vomiting, weight loss, constipation, anemia, irritability, lethargy. She has all of those. And yet the doctors didn't even consider lead poisoning. Why? Because I didn't mention living in an old house. So they didn't consider it, and waited for us to bring it up, and then tried to dismiss it, and we pretty much had to force them to test for it, and they only agreed because "Well, I guess it couldn't hurt." Yeah, it can't fucking hurt for you to DO YOUR JOB.
We asked about doing the protein drip in the IV, and she said couldn't do that because they'd have to use a larger diameter needle. I'm going to see if they can do that, but I'm scared to have them do it at Evans, because they are really shitty at placing IVs, they always take several sticks to get one in, and they've ruined all the veins in her arms and hands. When they sent us to Memorial for the MRI, memorial staff had to put the IV in her foot. Thankfully, that one is still in, so the people at Evans didn't have to stick her again. But I don't know how long that'll last, and I don't want her to still be there when she needs a new one.
I desperately want to get her out of Evans before they kill her, I just don't know how to do this. Deos anyone have any advice.
Thursday, July 8, 2010
Nursing a sick baby.
My almost three year old daughter is in the hospital, we don't know what's wrong with her, but hopefully the MRI we're waiting on will give us some clue. A week ago,she was a normal three year old, now she can't talk, she can't walk, she can't stand or sit up or even hold her head up. She's like a newborn. She doesn't respond to us, she doesn't move, she just lays on the bed and cries.
She won't eat or drink anything, we keep offering her favorites and special treats. She doesn't even want ice cream or soda. Today is the sixth day of exclusive breastfeeding. She was on an IV for a couple of days, but they took it out yesterday.
The doctor was trying to criticize me for nursing her, but my milk is the only sustenance she's getting. Maybe they should figure out how to get some food in her, instead of dumping on me for keeping her alive.
I'm also nursing my newborn, and the doctor says I shouldn't be tandem nursing because they need different types of milk. I know that, but my body is producing newborn milk, and there's nothing wrong with giving my older daughter newborn milk, especially considering the alternative is nothing.
They said that if I stop nursing her,she'll decide to eat, but it doesn't work like that. I went home last night while my mom stayed with her, she didn't nurse for over 12 hours, and she still wouldn't eat or drink.
And nursing is the only thing that consoles her. When she's not nursing, she's crying. We try holding her, singing to her, offering all her favorite things, etc. Nothing has any effect, except nursing her.
I guess I'm just looking for people to comfort me and tell me I'm doing the right thing. And has anyone been through something like this? Does anyone have any idea what this might be?
She won't eat or drink anything, we keep offering her favorites and special treats. She doesn't even want ice cream or soda. Today is the sixth day of exclusive breastfeeding. She was on an IV for a couple of days, but they took it out yesterday.
The doctor was trying to criticize me for nursing her, but my milk is the only sustenance she's getting. Maybe they should figure out how to get some food in her, instead of dumping on me for keeping her alive.
I'm also nursing my newborn, and the doctor says I shouldn't be tandem nursing because they need different types of milk. I know that, but my body is producing newborn milk, and there's nothing wrong with giving my older daughter newborn milk, especially considering the alternative is nothing.
They said that if I stop nursing her,she'll decide to eat, but it doesn't work like that. I went home last night while my mom stayed with her, she didn't nurse for over 12 hours, and she still wouldn't eat or drink.
And nursing is the only thing that consoles her. When she's not nursing, she's crying. We try holding her, singing to her, offering all her favorite things, etc. Nothing has any effect, except nursing her.
I guess I'm just looking for people to comfort me and tell me I'm doing the right thing. And has anyone been through something like this? Does anyone have any idea what this might be?
Wednesday, July 7, 2010
Tuesday, July 6, 2010
Monday, July 5, 2010
Joon's in the hospital.
Joon's in the hospital. They finally decided to admit her overnight. They should have fucking done that last night. They were going to just send her home with tylenol again tonight. It's just unbelievable that they could just ignore the fact that she's spent the last three days doing nothing but screaming and writhing in pain, and hasn't been eating or drinking for three days! I'm sorry, but tylenol is not going to fucking cut it. She's so weak she can't even hold her head up or hold her eyes open. She can't walk or even stand. She's been to the ER every day for the past three days, because they kept dismissing her and she kept getting worse! She is literally constantly crying and screaming. Even when she's asleep, she's still crying. And every few minutes her eyes fly open, her whole body tenses up, her limbs flail, and she SCREAMS as loud as she can. It seriously looks exactly like when I was in labour, during the transition stage, so I'm sure the pain she's having is as bad as that was for me. Earlier we thought she was having seizures, but we were told they're not because she's still screaming when it happens. It just looks like seizures, but with screaming. I don't know, but it's obviously something we can't handle at home, as evidenced by the fact that she keeps getting worse.
I had to come home, because Penelope couldn't stay there, and I have to be here with her. Andrew is staying with Joon, and we're going to go back in the morning.
There's a lot more to the story, that I need to write down, but right now I just really need to get some rest so I can go back and help out with Joon in the morning. I don't know if I'll even be able to sleep, with all this worrying, and being so angry at the idiot doctors who just don't give a fuck.
I had to come home, because Penelope couldn't stay there, and I have to be here with her. Andrew is staying with Joon, and we're going to go back in the morning.
There's a lot more to the story, that I need to write down, but right now I just really need to get some rest so I can go back and help out with Joon in the morning. I don't know if I'll even be able to sleep, with all this worrying, and being so angry at the idiot doctors who just don't give a fuck.
Saturday, July 3, 2010
ER
Off to the ER again, Joon has a probable ear infection. Why do these things always show up when the appointment line is closed for the next three days?
Thursday, July 1, 2010
Six weeks!
Penelope is growing up so fast.
She's six weeks old now. She's awake and alert most of the day, and sleeps most of the night. Nights have gotten so much better. Well, most nights. She still has colicky time, and sometimes it's hell getting her to sleep, but then she usually sleeps for a long time.
She smiles all the time. Fathers Day was the first I noticed that she kept smiling socially over and over again. She always wants to be held upright so she can look at everything. She wants people to interact with her constantly. She absolutely hates being in the car seat, and scream constantly the entire time we're driving.
And she's teething! When she was just five weeks old, I had two people point out that she has two teeth visible just below the gums! I didn't believe it at first, but it looks and feels like teeth, they're just where teeth should be, and they look exactly like Joon's did right before they cut through. It's just so crazy.
Penelope was 10 pounds when she turned a month old, so I decided to try her Goodmama diapers on. They fit her well, so we've been using those now. I want to get a few more cheap used ones. Her first goodmama was the panda one, so I'm going to be keeping that one for her memory box, along with her first newborn diaper, which was a panda Muttaqin.
I crocheted an awesome hat for Penelope. It's a brain slug from Futurama. It's so cute, and I'm pretty dang proud of it.
I took Penny swimming in Joon's kiddy pool. She seemed to have a good time, and it was super cute.
I earned this ribbon for nursing Penny for six weeks!
It was so much easier to get this ribbon than it was the first time I got it. Besides some engorgement when my milk came in, and some issues with overactive letdown, we haven't had any issues. Nursing has been going smoothly, and I expect to continue for as long as Penny wants to.
Soon I'll be getting the three year ribbon for Joon!
She's six weeks old now. She's awake and alert most of the day, and sleeps most of the night. Nights have gotten so much better. Well, most nights. She still has colicky time, and sometimes it's hell getting her to sleep, but then she usually sleeps for a long time.
She smiles all the time. Fathers Day was the first I noticed that she kept smiling socially over and over again. She always wants to be held upright so she can look at everything. She wants people to interact with her constantly. She absolutely hates being in the car seat, and scream constantly the entire time we're driving.
And she's teething! When she was just five weeks old, I had two people point out that she has two teeth visible just below the gums! I didn't believe it at first, but it looks and feels like teeth, they're just where teeth should be, and they look exactly like Joon's did right before they cut through. It's just so crazy.
Penelope was 10 pounds when she turned a month old, so I decided to try her Goodmama diapers on. They fit her well, so we've been using those now. I want to get a few more cheap used ones. Her first goodmama was the panda one, so I'm going to be keeping that one for her memory box, along with her first newborn diaper, which was a panda Muttaqin.
I crocheted an awesome hat for Penelope. It's a brain slug from Futurama. It's so cute, and I'm pretty dang proud of it.
I took Penny swimming in Joon's kiddy pool. She seemed to have a good time, and it was super cute.
I earned this ribbon for nursing Penny for six weeks!
It was so much easier to get this ribbon than it was the first time I got it. Besides some engorgement when my milk came in, and some issues with overactive letdown, we haven't had any issues. Nursing has been going smoothly, and I expect to continue for as long as Penny wants to.
Soon I'll be getting the three year ribbon for Joon!
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