That's about the size of it---working all the time to get any food into Janey. We can think about going home once she eats a little more than she is now, but she is very non-interested in food. Just now, as I started to write, we had a little breakthrough. Tony got a long thin loaf of fancy bread at the Whole Foods near here, and Janey is holding it and taking mini-bites. She actually asked for it when we thought she was done and took it away. It's the first she's really eaten without being seriously urged. This morning, she ate a slice of onion---one of her favorite foods, and she's had a few slivers of salami. But that's about it for today. That isn't enough. She is getting some breaks from the round the clock nutrition by IV, to try to get her hungry. I know she will eat in time, but I wish it would be now, although I know she is regulating herself based on what she feels like she can stand.
Otherwise, she is mostly okay. Today is the last day of her antibiotics---day 14. It's hard to believe this is day 15 overall in the hospital. In today's drive-through hospital stay world, that's a long, long time. She is walking with a lot more ease. She does still have diarrhea and quite a rash in that area, but her digestive sounds are good, and two of her three drains have been taken out.
That's the physical part. As Janey gets feeling a bit better, it's getting harder to keep her happy here. Part of how we knew how very sick she was is how easy she was to care for, when she was sleeping huge parts of the day, watching TV listlessly and just not fighting anything. Now, she is getting bored, I think. Thank goodness for the iPad. For years, we resisted letting her use the iPad as an alternative TV. The iPad was the device that was supposed to change autism, to teach Janey to communicate, to learn! I put all kinds of educational programs on there, "fun" one, but I didn't show her that she could watch YouTube on there too. Well, of course that is no longer the case. We put on YouTube Kids, a great program which allows her access to a filtered YouTube, and she is watching it around the clock. She loves the control, so she can watch as little or as much of a show as she wants. I've tried to show her how to use the voice search, but she doesn't like to talk on demand in that way.
I have a million thoughts about the hospital experience and autism, especially ones comparing this stay with her stay last November as a boarder waiting for a psychiatric bed. But I've decided to wait on writing more about that until she is home, because I need a full perspective on the stay, and because right now, my main focus is on getting her better and recording the steps that are leading us to that.
Thank you for reading, for your love and thoughts and prayers and support! We have needed and will be needing it badly!
Rarer in Girls...Life with my daughter Janey, who is 21 and severely autistic
Showing posts with label ruptured appendix. Show all posts
Showing posts with label ruptured appendix. Show all posts
Thursday, June 11, 2015
Sunday, June 7, 2015
Part Seven---Drain, drain, go away
Of the days we've been in the hospital, yesterday might have been the least eventful. Janey ran a fever a bit, had some pain and got some morphine for it off and on, took some good naps and just hung in there. The down side of yesterday was that she noticed her drains, and started to try to touch them and pull at them. They are tubes coming out of her belly, with bags attached. They drain out fluids (if you've stopped reading by now because you are a little faint, you are like I would have been before going through this). Twice a day, a surgeon injects them with the same substance given to people who have had a stroke. This is to break up clots and keep them flowing.
Janey is trying to get at the drains off and on all the time now. When she really gets going, we have to put a soft restraining thing on her arm with Velcro, which keeps her from using her elbow. She always has one of these on the other hand, to cover the PICC line, as it would be very, very bad if she got at that, so I hate to cover her free arm, but I would more hate for her to infect the drains or pull them out. The nurses are so wonderfully reluctant to use any restraints. They try everything else first. But at times, it's more important than anything else to keep her safe and healing.
This morning, we took Janey for a walk around, which is quite an operation as it's hard to get her to standing without causing her pain, and she gets tired very quickly. But we walked to the child life room and she enjoyed looking at the fish, then we got a wheelchair and walked to another fish tank. Then she was very tired out and we went back to the room. It is hard to see that Janey is that sick, that a simple walk is almost more than she can do.
I slept the most last night I have in a while, thanks to Tony staying awake a lot. It's strange that this makes me feel more tired today. I think when I get a little rest, the adrenaline or whatever keeps me going stops pumping out, and I am not as able to run on fumes.
Talking to the surgeon this morning, we decided it was better that one of us be here for Janey during Freddy's high school graduation tomorrow. I wish we could both be there, but Freddy understands, and we will have other friends and family there. Tony is going to stay with Janey. I keep thinking how Janey was born on Freddy's seventh birthday, and in some ways, he's been sharing the time for his big events since then. He is an amazing brother to her, and we are so proud of him and of William.
So the story goes on. It's a story that if you had told me two weeks ago we were about to start, I'd have not believed you. And I do hope before too too long, it all again feels like a long ago, unbelievable dream.
Janey is trying to get at the drains off and on all the time now. When she really gets going, we have to put a soft restraining thing on her arm with Velcro, which keeps her from using her elbow. She always has one of these on the other hand, to cover the PICC line, as it would be very, very bad if she got at that, so I hate to cover her free arm, but I would more hate for her to infect the drains or pull them out. The nurses are so wonderfully reluctant to use any restraints. They try everything else first. But at times, it's more important than anything else to keep her safe and healing.
This morning, we took Janey for a walk around, which is quite an operation as it's hard to get her to standing without causing her pain, and she gets tired very quickly. But we walked to the child life room and she enjoyed looking at the fish, then we got a wheelchair and walked to another fish tank. Then she was very tired out and we went back to the room. It is hard to see that Janey is that sick, that a simple walk is almost more than she can do.
I slept the most last night I have in a while, thanks to Tony staying awake a lot. It's strange that this makes me feel more tired today. I think when I get a little rest, the adrenaline or whatever keeps me going stops pumping out, and I am not as able to run on fumes.
Talking to the surgeon this morning, we decided it was better that one of us be here for Janey during Freddy's high school graduation tomorrow. I wish we could both be there, but Freddy understands, and we will have other friends and family there. Tony is going to stay with Janey. I keep thinking how Janey was born on Freddy's seventh birthday, and in some ways, he's been sharing the time for his big events since then. He is an amazing brother to her, and we are so proud of him and of William.
So the story goes on. It's a story that if you had told me two weeks ago we were about to start, I'd have not believed you. And I do hope before too too long, it all again feels like a long ago, unbelievable dream.
Friday, June 5, 2015
Janey's burst appendix story----Part Five
I very much hope this story doesn't get more than a few parts longer. Yesterday, that was looking more likely. Today, not so much.
Janey got moved back down to the regular ward yesterday afternoon. We were very hopeful when that happened. Her surgeon thought her belly felt much better, and had digestive sounds, and although she had originally planned on getting a CAT scan, she cancelled it. There was also a lot of talk of getting her a PIC line for nutrition, but with the belly seeming better, it was decided to give her a day to try to start eating, and she was allowed clear fluids.
However, she didn't have much interest in eating (or drinking, really). She did have some ginger ale and a bit of lemon ice, but mostly she pushed away anything we tried to give her. She also seemed to be in more pain, although she hasn't had a fever in almost two days now. She was restless. The room we are in has two beds, and she was determined to move to the one she wasn't on. So determined that she knocked out an IV trying to move once and then loosened one another time, sending out blood. She also is still having diarrhea, lots of it.
So this morning, her surgeon decided to order the CAT scan after all, and she is there now getting it (with Daddy) She thinks she has an abscess forming, and that would need to get a drain. They also are going to finally get the PIC line, as Janey is getting thinner and thinner. She is looking bony. She hasn't had real food for 11 days now, which is just way too long.
It's hard to believe all this is still going on, but in other ways, it feels like it's been going on for a lifetime. I feel like I can barely remember life outside this hospital, at times.
Last night, Tony slept here where I slept in the extra bed. Usually, I have him sleep at home or in another room, because he is a heavy sleeper and I am not, and we want to hear what is going on. That was the plan yesterday, until I just felt I'd hit some kind of limit. It wasn't tiredness---I've almost gotten used to that. It was a feeling that I could not longer make decisions. I could no longer tell if Janey was having an issue I should call the nurse about, if she were fine or not fine. I think I'd had so many days of total vigilance that whatever brain system handles that was no longer working. So Tony took over that, and I went and ate some dinner and sat in the parent room and read. It helped.
My mind is still too much of a whirl at this point to be sure, but I think I know what I need to do when this is over. I need to reach out to those in medicine that deal with autism. I need, in some way, to educate those non-autism specialists what autism looks like, and crucially, how to proceed when dealing with a child that might be critically ill but doesn't show it in typical ways. I talked yesterday to a woman here who is kind of an autism liason with the hospital, and she mentioned I might want to try to join the parent board of the hospital, as she thinks they don't have a special needs parent. I am far from a joiner, but that might be something I have to try.
So---we'll be here for a while yet. Yesterday there was talk of us getting home by Monday, which is Freddy's graduation day. Today that talk seems to be gone. Of course, that could change again tomorrow. I've figured that much out there---it's an hour by hour thing. You can't really make plans, because Janey's body is the one making the plans. I hope it's planning for a full recovery in the fairly not so long future.
Janey got moved back down to the regular ward yesterday afternoon. We were very hopeful when that happened. Her surgeon thought her belly felt much better, and had digestive sounds, and although she had originally planned on getting a CAT scan, she cancelled it. There was also a lot of talk of getting her a PIC line for nutrition, but with the belly seeming better, it was decided to give her a day to try to start eating, and she was allowed clear fluids.
However, she didn't have much interest in eating (or drinking, really). She did have some ginger ale and a bit of lemon ice, but mostly she pushed away anything we tried to give her. She also seemed to be in more pain, although she hasn't had a fever in almost two days now. She was restless. The room we are in has two beds, and she was determined to move to the one she wasn't on. So determined that she knocked out an IV trying to move once and then loosened one another time, sending out blood. She also is still having diarrhea, lots of it.
So this morning, her surgeon decided to order the CAT scan after all, and she is there now getting it (with Daddy) She thinks she has an abscess forming, and that would need to get a drain. They also are going to finally get the PIC line, as Janey is getting thinner and thinner. She is looking bony. She hasn't had real food for 11 days now, which is just way too long.
It's hard to believe all this is still going on, but in other ways, it feels like it's been going on for a lifetime. I feel like I can barely remember life outside this hospital, at times.
Last night, Tony slept here where I slept in the extra bed. Usually, I have him sleep at home or in another room, because he is a heavy sleeper and I am not, and we want to hear what is going on. That was the plan yesterday, until I just felt I'd hit some kind of limit. It wasn't tiredness---I've almost gotten used to that. It was a feeling that I could not longer make decisions. I could no longer tell if Janey was having an issue I should call the nurse about, if she were fine or not fine. I think I'd had so many days of total vigilance that whatever brain system handles that was no longer working. So Tony took over that, and I went and ate some dinner and sat in the parent room and read. It helped.
My mind is still too much of a whirl at this point to be sure, but I think I know what I need to do when this is over. I need to reach out to those in medicine that deal with autism. I need, in some way, to educate those non-autism specialists what autism looks like, and crucially, how to proceed when dealing with a child that might be critically ill but doesn't show it in typical ways. I talked yesterday to a woman here who is kind of an autism liason with the hospital, and she mentioned I might want to try to join the parent board of the hospital, as she thinks they don't have a special needs parent. I am far from a joiner, but that might be something I have to try.
So---we'll be here for a while yet. Yesterday there was talk of us getting home by Monday, which is Freddy's graduation day. Today that talk seems to be gone. Of course, that could change again tomorrow. I've figured that much out there---it's an hour by hour thing. You can't really make plans, because Janey's body is the one making the plans. I hope it's planning for a full recovery in the fairly not so long future.
Tuesday, June 2, 2015
Janey's Burst Appendix Story---Part 3
If I could make wishes come true, this part of the story would be featuring us getting ready to go home, Janey almost all better. But I can't make wishes come true, so I'll have to tell the story as it is happening.
Yesterday morning, Janey's oxygen was still a big issue. The plan was to get her up and walking around more, to try to get the fluid that had built up in her lungs down. She had gained 13 pounds of water weight in 5 days, without eating literally anything at all. So the swelling was pushing on her lungs, as a chest x-ray showed. We tried a walk around the floor, followed by Janey sitting up in a chair. She got very, very tired from this, and when she got in bed, she went into a sleep that was very hard to wake her from. If the oxygen mask left her face even for a minute, her oxygen went down, sometimes as low as 77, which is very low indeed.
One of the doctors on her surgical team came to see her, and it was decided it was time to take her to the the PICU, the Pediatric Intensive Care Unit. It was too hard to wake her and her breathing was too compromised to stay in the regular unit. So around 2 pm, we were moved to the PICU.
To work on getting Janey's fluid down, she was given a diuretic drug. This worked pretty well. Her swelling went down quite a lot, and gradually, as the evening and night went on, she was requiring less oxygen and was breathing better. By morning, she was on room air. Her oxygen levels now are around 93 or so, without oxygen---not perfect, but okay.
I got to listen in on her rounds this morning, where her case was discussed. At that point, people were feeling better about things, and it was decided that if she stayed stable, possibly she would be able to go back to the regular floor this afternoon.
Janey hasn't eaten really anything since last Monday, 8 days. She's had IV fluids, but no food and most of the time, not even any water in her mouth. The doctors said today she could have water, and clear liquids. We offered her a choice, and she decided on a juice box. She drank literally one tiny sip of it and threw up. An hour later, she threw up again, far more than she had drunk.
By chance, the surgeon that had done her surgery was walking in the door as Janey threw up. That started a discussion. Janey's fever has never gone totally down for more than a few hours. Today, it is higher than yesterday. So, since she has shown her gut is still not working at all, the surgeon, Dr. Kelleher, said she might have an abscess in her digestive trait, as she had warned us could happen.
So---tomorrow she will have an ultrasound to see if there's an abscess. If there is, she will have a drain put in to work on clearing it. That will not be fun.
Either way, it's probable that tomorrow she will have a special IV put in to allow her to get nutrition in an IV. I think this is called TPN. Her water drinking privileges are over for now. She will stay in the ICU for at least another night.
Those are the facts. My feelings---well, I will hold off on getting into a lot of those. It's all too raw right now. I'll just say that just after she came to the ICU yesterday, I went to get something to eat while Tony was with Janey. Somehow, my mind was such that I went outside and got lost. I walked around the huge hospital complex aimlessly, unsure how to find anything, and pretty much not caring. It was raining hard and I was numb to that and everything else. When I finally ran across the front entrance, pretty much by change, and found my way to the cafeteria, I felt like I had forgotten how to do the most basic things in life. There were lines to get hot food, but it seemed far too complicated to do that. I grabbed the first sandwich and soda that hit my hands, and sat down to eat them. I was mostly done with the sandwich when I realized it had olives in it. I hate olives with a passion. Then I looked at my soda. It was Sprite Zero. I hate diet soda. All this to say---I was completely, totally, absolutely out of my head overwhelmed.
I calmed down after that, and today I am feeling back like myself, in reality. Not to say it feels like any reality I expected to happen. I would not have been surprised at many things that could have happened with Janey, but this? She has barely been sick a day in her life.
I was thinking how it would feel in the pre-internet world to be here. As scary as this all is, I don't feel alone. When I was awake in the middle of the night last night and wrote a post on Facebook, people saw it and commented within minutes. That's an example of the miracle of having friends all over the world, people I have never met in person but that I have met with my heart. Thank you, friends.
Yesterday morning, Janey's oxygen was still a big issue. The plan was to get her up and walking around more, to try to get the fluid that had built up in her lungs down. She had gained 13 pounds of water weight in 5 days, without eating literally anything at all. So the swelling was pushing on her lungs, as a chest x-ray showed. We tried a walk around the floor, followed by Janey sitting up in a chair. She got very, very tired from this, and when she got in bed, she went into a sleep that was very hard to wake her from. If the oxygen mask left her face even for a minute, her oxygen went down, sometimes as low as 77, which is very low indeed.
One of the doctors on her surgical team came to see her, and it was decided it was time to take her to the the PICU, the Pediatric Intensive Care Unit. It was too hard to wake her and her breathing was too compromised to stay in the regular unit. So around 2 pm, we were moved to the PICU.
To work on getting Janey's fluid down, she was given a diuretic drug. This worked pretty well. Her swelling went down quite a lot, and gradually, as the evening and night went on, she was requiring less oxygen and was breathing better. By morning, she was on room air. Her oxygen levels now are around 93 or so, without oxygen---not perfect, but okay.
I got to listen in on her rounds this morning, where her case was discussed. At that point, people were feeling better about things, and it was decided that if she stayed stable, possibly she would be able to go back to the regular floor this afternoon.
Janey hasn't eaten really anything since last Monday, 8 days. She's had IV fluids, but no food and most of the time, not even any water in her mouth. The doctors said today she could have water, and clear liquids. We offered her a choice, and she decided on a juice box. She drank literally one tiny sip of it and threw up. An hour later, she threw up again, far more than she had drunk.
By chance, the surgeon that had done her surgery was walking in the door as Janey threw up. That started a discussion. Janey's fever has never gone totally down for more than a few hours. Today, it is higher than yesterday. So, since she has shown her gut is still not working at all, the surgeon, Dr. Kelleher, said she might have an abscess in her digestive trait, as she had warned us could happen.
So---tomorrow she will have an ultrasound to see if there's an abscess. If there is, she will have a drain put in to work on clearing it. That will not be fun.
Either way, it's probable that tomorrow she will have a special IV put in to allow her to get nutrition in an IV. I think this is called TPN. Her water drinking privileges are over for now. She will stay in the ICU for at least another night.
Those are the facts. My feelings---well, I will hold off on getting into a lot of those. It's all too raw right now. I'll just say that just after she came to the ICU yesterday, I went to get something to eat while Tony was with Janey. Somehow, my mind was such that I went outside and got lost. I walked around the huge hospital complex aimlessly, unsure how to find anything, and pretty much not caring. It was raining hard and I was numb to that and everything else. When I finally ran across the front entrance, pretty much by change, and found my way to the cafeteria, I felt like I had forgotten how to do the most basic things in life. There were lines to get hot food, but it seemed far too complicated to do that. I grabbed the first sandwich and soda that hit my hands, and sat down to eat them. I was mostly done with the sandwich when I realized it had olives in it. I hate olives with a passion. Then I looked at my soda. It was Sprite Zero. I hate diet soda. All this to say---I was completely, totally, absolutely out of my head overwhelmed.
I calmed down after that, and today I am feeling back like myself, in reality. Not to say it feels like any reality I expected to happen. I would not have been surprised at many things that could have happened with Janey, but this? She has barely been sick a day in her life.
I was thinking how it would feel in the pre-internet world to be here. As scary as this all is, I don't feel alone. When I was awake in the middle of the night last night and wrote a post on Facebook, people saw it and commented within minutes. That's an example of the miracle of having friends all over the world, people I have never met in person but that I have met with my heart. Thank you, friends.
Sunday, May 31, 2015
Janey's Burst Appendix Story---Part One
Wow. Thinking about the past few days---wow. It's truly hard to take in what has happened. I think this experience will take a lot of blog posts to really explain and process, but here as Janey sleeps at Mass General, I'm going to try to start telling the story. If I don't make sense here and there, I'm operating on a minimum of sleep!
I wrote about Janey's visit to the ER early Wednesday morning, when we thought she had a seizure. During the day Wednesday at home, it was obvious to me that she was not doing well. We looked at a list of reasons to take her back to the ER, and she had pretty much every one---high fever, hard to wake up, not eating, lots of diarrhea, etc. At 6 pm we made the decision to take her back in. I was on no sleep, so Tony took her along with her brother Freddy.
The ER staff was concerned to see her back. They started testing her to try to figure out what was up. As before (and as we have found right along here), everyone was very, very respectful of her autism and the fact she might be showing how she felt differently than other kids. They did blood tests, which showed she had an infection of some kind, and they started her on an IV. It was decided to admit her fairly quickly, to try to figure this all out.
The next day, Thursday, she seemed overall better. Her fever was a little lower, she seemed in less pain, she was eating a small amount. They did an ultrasound, which didn't show much---they couldn't see her appendix at all. By Thursday night, when the doctors came to see us, they were talking about her going home---that she probably had a bad stomach flu.
That was when Tony and I told them something, and they listened to something, that very well, not to be dramatic, might have saved Janey's life. We said she was acting VERY much not like herself. She was calm, too calm. She wasn't moving around or trying to get up at all. She was letting people do things like put in IVs without much protest. She was a model patient. And that is not Janey. I am so glad the doctors listened. Based on that, Friday morning, they did another ultrasound. When it again didn't show much, and her blood tests showed her infection was growing (although her white blood cell count was fine), they did a CAT scan, just to be sure.
The CAT scan was an amazing experience, in how the hospital handled it. The lead nurse went with us. This was partly because she herself has a 22 year old son with autism and aggression. She is part of our club. This was huge. Everyone listened to what I said would work and not work with Janey, and with that, she was wonderful for the CAT scan. She stayed calm and actually seemed to enjoy it. And they got a perfect view of what was going on.
What was going on, of course, was a ruptured appendix.
Things happened fast after that. Around 1, they told me she would go to surgery in an hour. I called Tony at work. He works close to the hospital, and came right over, just in time to come with us to the ER. The ER staff talked to us for quite a while, about how the surgery would be done, what complications might come up, and a bit, how serious this situation was. We were able to go in as she was put under.
Waiting in Janey's hospital room---what can I say? All I can say is when they called and said all had went well and we could come down to see her as she came to----well, that was a good moment.
Out of surgery, Janey was out of it. The surgeons explained her large intestines had been totally filled with pus and infection. Based on this, they guessed the appendix had burst three days before. Three days. Three days Janey must have been in intense pain, with an infection growing and growing and growing. But although she was certainly not happy, she didn't act like someone with a burst appendix, and that is a hugely important point. Our kids DO NOT ACT like other kids when they have a serious illness. In Janey's case, even her blood didn't. Her white count was perfectly normal---something you just don't see with a burst appendix.
I will write more about what has been happening post surgery later, maybe later today. It's been far from a smooth recovery. We will be in the hospital for a while. But I wanted to get this much down, and to say, right away, that the two biggest lessons for me here are----one, realize that Janey might be far sicker than she lets on, and two---get medical care from people who listen to parents and care about understanding autism. I will follow those rules from now on, like her life depends on it, because it might.
I wrote about Janey's visit to the ER early Wednesday morning, when we thought she had a seizure. During the day Wednesday at home, it was obvious to me that she was not doing well. We looked at a list of reasons to take her back to the ER, and she had pretty much every one---high fever, hard to wake up, not eating, lots of diarrhea, etc. At 6 pm we made the decision to take her back in. I was on no sleep, so Tony took her along with her brother Freddy.
The ER staff was concerned to see her back. They started testing her to try to figure out what was up. As before (and as we have found right along here), everyone was very, very respectful of her autism and the fact she might be showing how she felt differently than other kids. They did blood tests, which showed she had an infection of some kind, and they started her on an IV. It was decided to admit her fairly quickly, to try to figure this all out.
The next day, Thursday, she seemed overall better. Her fever was a little lower, she seemed in less pain, she was eating a small amount. They did an ultrasound, which didn't show much---they couldn't see her appendix at all. By Thursday night, when the doctors came to see us, they were talking about her going home---that she probably had a bad stomach flu.
That was when Tony and I told them something, and they listened to something, that very well, not to be dramatic, might have saved Janey's life. We said she was acting VERY much not like herself. She was calm, too calm. She wasn't moving around or trying to get up at all. She was letting people do things like put in IVs without much protest. She was a model patient. And that is not Janey. I am so glad the doctors listened. Based on that, Friday morning, they did another ultrasound. When it again didn't show much, and her blood tests showed her infection was growing (although her white blood cell count was fine), they did a CAT scan, just to be sure.
The CAT scan was an amazing experience, in how the hospital handled it. The lead nurse went with us. This was partly because she herself has a 22 year old son with autism and aggression. She is part of our club. This was huge. Everyone listened to what I said would work and not work with Janey, and with that, she was wonderful for the CAT scan. She stayed calm and actually seemed to enjoy it. And they got a perfect view of what was going on.
What was going on, of course, was a ruptured appendix.
Things happened fast after that. Around 1, they told me she would go to surgery in an hour. I called Tony at work. He works close to the hospital, and came right over, just in time to come with us to the ER. The ER staff talked to us for quite a while, about how the surgery would be done, what complications might come up, and a bit, how serious this situation was. We were able to go in as she was put under.
Waiting in Janey's hospital room---what can I say? All I can say is when they called and said all had went well and we could come down to see her as she came to----well, that was a good moment.
Out of surgery, Janey was out of it. The surgeons explained her large intestines had been totally filled with pus and infection. Based on this, they guessed the appendix had burst three days before. Three days. Three days Janey must have been in intense pain, with an infection growing and growing and growing. But although she was certainly not happy, she didn't act like someone with a burst appendix, and that is a hugely important point. Our kids DO NOT ACT like other kids when they have a serious illness. In Janey's case, even her blood didn't. Her white count was perfectly normal---something you just don't see with a burst appendix.
I will write more about what has been happening post surgery later, maybe later today. It's been far from a smooth recovery. We will be in the hospital for a while. But I wanted to get this much down, and to say, right away, that the two biggest lessons for me here are----one, realize that Janey might be far sicker than she lets on, and two---get medical care from people who listen to parents and care about understanding autism. I will follow those rules from now on, like her life depends on it, because it might.
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