Re-evaluating Janey

Today was supposed to be Janey's IEP meeting day, the re-evaluation one that takes place every three years, but one of her therapists didn't have a chance to evaluate her, so it's been delayed until the end of the month.  I did get, though, a progress report on her ABA therapy, and it was interesting to read. As I was preparing mentally for the meeting over the past weeks, I was also doing my own mental evaluation of the last three years.  How has Janey grown?  What areas are still tough?  What do we want to work on for the future?

The last three years for Janey has been eventful.  As most of you know, they featured hospital time, both time in a psychiatric hospital (with six horrible days of "boarding" in a children's hospital before that), and time in a regular hospital, for a very complicated burst appendix.  Those stays are the big things that stand out about the last three years, but there's a lot more to think about.

I'm not sure I'd go that far, but it's the only image I found that worked at all!

How would I define Janey right now, if I looked at her with fresh eyes?  Well, she's mostly a happy 12 year old, and that is wonderful.  That alone is almost enough.  She has many more happy than sad days.  She knows what she enjoys, and she knows how to ask for those things---car rides, music, videos, food, snuggling.  She's gone through puberty earlier than most, and she looks like an adult, physically, which is tough in some ways but not in others.  She continues to be very intellectually disabled.  She talks mostly in single words or phrases, she doesn't reliably recognize letters or numbers, she can't write or draw---she is and, baring a miracle, always will be unable to care for herself, live on her own, work (except in some hugely sheltered way).

The joy of her life, and the area where she in many ways is far beyond most, is music.  She has hugely sophisticated taste in music.  She knows what she likes and doesn't like, and lets us know.  Although she won't perform on demand, she very often surprises us by singing a song we don't think she's heard for years.  I do think she knows every song she's ever heard by heart, tunes and lyrics.  Music is her joy in life.  She learns far more easily when music can be part of the lesson.  She loves to dance.  It would be impossible to describe Janey as a person without mentioning music.

There are parts of life with Janey that are intensely frustrating, for us and we are quite sure for her.  Toilet training---not there.  Closer than three years ago, but inconsistent and far from reliable.  Communication, especially in terms of what is upsetting her, is still very hard for her.  She still often self-injures, by biting her arm or scratching her chest.  She occasionally lashes out at us or others---not as often as in the past, but when she's very upset, it's a concern.

The ABA evaluation, even in their required formal language, captured a lot of what makes Janey Janey.  Even the statistics---there would often be a task she did with 100% accuracy on one date and then with something like 20% accuracy on a later date.  The notes say that much depends on her mood and her level of arousal.  Janey in her best mood is so different than Janey in her worst mood that it's hard sometimes to believe she's the same person.  Nevertheless, she's made progress, and sometimes we even see school progress carried over to home.  She will ask for help when she needs it, she sometimes tells us when something hurts ("does your toe hurt?), she responds with "yes" and "no" more readily than she used to.

I think almost the more important three year re-evaluation is that of Tony's and my attitude.  I don't think any parent could go through the scares we did with Janey without an intensification of how much we treasure her.  We are so glad she's here with us.  We worry less than we used to about progress.  We accept that much of how Janey is is how she will remain, and that is fine.  On the less positive side, in some ways, we are tired.  We still so very much wish there was more respite available.  It's the week of both our birthdays, and that is always a reminder that autism, or Janey's brand of autism, never, ever gives you a break.  She comes first.  We don't have a life outside of caring for her during any non-school hour.  We love her so much, but she consumes us.  We can accept that, but I think we could be better parents to her with more help.  There are parts of life with Janey that would challenge the patience of a saint.  And then, there are parts of life with her that would delight and enchant anyone.

It's been a true privilege to share Janey's life with all of us, and to be able to be a part of your lives.  I will continue to do that for as long as I can, hopefully for the rest of my life.  It's the way that, with the restraints life with Janey has placed on me, I can try to light a candle instead of cursing the darkness. I think of all the others living this life often, and I hope all of your re-evaluations contain some elements of joy.

One year ago today

A year ago today, Janey had emergency surgery to remove her burst appendix.  The surgery was preceded by days of extreme sickness (the surgeon estimated it had been burst for 3 days before it was removed) and was followed by weeks of complications----a stay of three days in intensive care for breathing problems, another surgery to place tubes due to abscesses, being fed by TPN into her bloodstream for quite a while, much weight loss---it's hard to believe it all happened, looking back.

In a lot of ways, the health crisis changed how we look at life with Janey. To put it in a slangy way, we don't sweat the small stuff as much.  We focus more on making Janey's life happy and calm.  I think it's safe to say we decided to change our behaviors instead of trying to get her to change hers.  We did this at first because for several months, she was still very affected by the hospital stay.  She was, as the surgeon told us she would be, debilitated.  It was important to focus on very basic things, like making sure she ate and drank.  

To our surprise, life with Janey got easier, overall, when we tried less to change her and more to change ourselves.  That's not why we did it, but we realized that if she's happy, everyone is happy.  If we keep her calm, we all can live our lives a bit more.  

Of course, there's no miracle change.  There are still days when Janey screams a very, lot, cries constantly, gets frantic for reasons we don't understand.  But there are less of them, and they feel less desperate.  They don't seem to last as long or usually be as intense.

In the hospital, Janey watched "The Spongebob Squarepants Movie" about 50 times.  Since then, she's watched it maybe 100 more times.  That's a good example of a change we've made.  I used to always try to get her to watch new things, or, heaven forbid, not watch anything when watching TV was what she wanted.  Now, we let her watch what she wants, when she wants.  She doesn't watch more TV, I wouldn't say, but we relax and let her enjoy it, and enjoy the time it gives us.  Believe me, that was a breakthrough for me.  I always pictured myself with kids that shunned TV and instead played with wooden organic toys and begged me to let them get one more library book.  But that was me---my dream, my vision of parenthood.  

Janey sleeps every night with a pillow covered with a flannel pillowcase she got in the hospital.  I looked up just now to see the name of the charity that makes pillowcases for children's hospitals---it's Ryan's Case for Smiles.  Janey has never been attached to any object like she is to that pillowcase.  She looks for it the minute she comes in the house.  That's just one example of all the kindnesses we were shown at Mass General Hospital.  If you have to have a child spend almost a month in the hospital, that is the place to be.

I feel like this post is disjointed, and that is partly because my mind keeps drifting back to a year ago.  Of all the things I ever worried about with Janey, a severe physical health crisis was about the last.  I wish it all hadn't happened, of course, but it did, and the perspective it gave me has changed me.  Our kids, all our kids, are precious.  It sounds like a sappy card, but I realize you can't take a single day for granted.  Janey, I am so glad you are with us today.

If I could ask you, Janey...

What if somehow, I could ask Janey all the things I wonder about her, and she could answer me, answer me clearly and fully?  I have a store of questions a hundred pages long.  Here's a few of them.

Do you like school?   I hear from your teachers if you had a good or bad day, what activities you had, some of what you learn.  But no-one but you can really tell me if you are happy at school, or tell me how you feel about the types of things your brothers told me---what kid in the class annoys you, what lunch is like and who you sat with, a funny thing that happened in class, a moment you felt scared there about something.  I don't have any idea what school really feels like for you.

What makes you like certain movies and TV shows so much?  I certainly know what you like to watch, but I often wonder---why those particular videos or shows?  Why do you watch "The Goofy Movie", with the story of father son bonding and a road trip, over and over?  Why is your favorite Disney movie "Hercules", a movie most people think is one of their weakest offerings?  What is it about that certain episode of Little Bear where Uncle Rusty babysits that makes you want to see it over and over, and makes you scream if I try to put on a new episode?  I would love so much to know what you like about the shows that you like.

When your appendix burst, how did it feel?  How could we have not known how much pain you must have been in?  That one haunts me.  We think Janey's appendix had been ruptured for three days before it was removed.  The pain must have been incredible.  We knew she was sick, enough that we took her twice to the emergency room, but neither us nor the medical professionals at one of the best hospitals in the world knew how serious it was, not until a CAT scan was done.  How could that be?  Do you feel pain differently?  Did you think we did know somehow and just weren't doing anything?

Do you understand at all why people come and go?  You miss Daddy so much every day while he is at work.  Do you have any notion what "work" is, why he has to sometimes leave for the day?  We say your brothers are at college, and you have seen their rooms, but do you get at all why part of the year, they go to live someplace else?  You ask for Auntie Carrie, for Nana and Grandpa, for Auntie Rose.  Do you get that they have their own houses, some of them very far from us?

Why do you scream?  I know there might be all kinds of answers to that one, but what most upsets you?  Why can you be happily watching a movie and suddenly, you scream, like you are in horrible pain?  Are you?  Is it when you don't understand something?  How can we help?

Why do you say "duck" between thoughts?  This is one I wonder about a great deal, although it's not as big an issue as some of the others.  You use the word "duck" like a divider, like a period or a dash, or a repeat sign.  You'll say something like "I know what you mean, but it's just not funny!  DUCK.  I know what you mean, but it's just not funny!  DUCK  You stole my pencil!  DUCK  I can write your name better than you can!"  All quotes from one of your favorite episodes of The Simpsons, but why the Duck in-between parts?  What does it mean?  How did it get started?

What could I do to make your life happier?  That is what I want to know the most, Janey.  I wish you could tell me all the little things and big things that would make you happy.  What could I get for you?  Where do you want to go?  What are your dreams?  Do you have dreams?  I guess at these things; I try as hard as I can to make your life as meaningful as I can.  But the truth is, there is so much about you I just don't know.  I love you so intensely, Janey, but I often feel like I have failed you.  Without the ability to communicate verbally at more than a basic level, without another form of communication, I am so often left guessing.  I can read about people with autism that have learned to communicate, and I can get some ideas, but they are not you, Janey.  You are, like every person with autism, like every person in the world,  a unique, fascinating, complex person, and in so many ways, Janey, I don't know you.

How is Janey doing?

A lot of people have been asking me that question---how is Janey doing at home?  How is her recovery?

Well, it's slow but steady.  She is eating much better than she was, is drinking a good amount, her digestive system seems to be working well based on pullups, she doesn't seem to be in pain most of the time.  She hasn't had any fevers or signs of infection.  Those are all good things!

However, she is still what the surgeon told us to expect, "debilitated".  At the time, it struck me as an unusual word to use.  It sounded more severe than anything I pictured.  But it's actually a very accurate word.  Janey really is debilitated.  She still needs a huge amount of rest.  She spends a lot of the day lying down in bed.  She gets very tired after walking.  She walks hunched over most of the time.  She looks thin and pale.  She looks like what she is, someone who was seriously ill and in the hospital for a long time.

We are taking her out a little at a time.  This afternoon, we took her along when taking her brother William to work at Whole Foods, and took her in the store for a few minutes.  She usually likes Whole Foods a lot, but this time, she got extremely worn out quickly.  I wound up taking her back to the car while Tony checked out.  It's probably lucky that I've gotten used to getting stares over the years due to Janey's behavior, as we got stares.  Not because of her behavior, which was very quiet, but because of the careful and hunched way she was walking, and the fact we had to stop and rest a few times on the way to the car.  They are different kinds of stares than I am used to.  The behavior stares are more curious, more stealthy and sometimes a bit judgey.  These stares look concerned, unsettled.  I don't like either kind much, but I can understand these a bit.

Janey's behavior?  It is not back to normal, but there are shades of it.  She gets very upset when we tell her no, which we are not having to do a lot of---she isn't asking for much.  But when we have to say no, she screams quickly and loudly, intensely, and then it's over, like she knows she won't have the energy to cry for long.  She is biting her arm when she's upset, but she hasn't been aggressive to others at all lately, save one slap to my face a few days ago.  Mostly, she's like a tired version of her old self.  There is no jumping up and down, no running around, no climbing things to get what she wants.  She is watching a great deal of YouTube on her iPad, like in the hospital.

An interesting thing I've noticed is that Janey seems to appreciate little things I don't think she ever noticed much before.  When we first got home, and she was on her own bed, with her own blankets, she smiled the hugest smile you can imagine.  We were all gathered around, and it was a wonderful moment.  I can imagine that despite us trying to explain otherwise to her, she might have not been sure if she had permanently moved to the hospital, and she seemed thrilled that was not the case.  When she asks me to lie with her on the bed, and I do, she has been smiling at me with the sweetest, most loving smile I've ever seen.  She often wanted me to lie with her in the hospital, and there just wasn't room, and I think she loves it than now we can do that.

I can't imagine what has gone on in Janey's mind about this whole ordeal.  I've tried to explain it to her, and she can say "appendix", but I don't think she understands much at all.  To her, it must have felt like some odd kind of arbitrary torture at times.  I keep thinking of the times when she couldn't have anything by mouth, even water.  She would ask over and over and over "Water?  Water, please!  Water!" and we would have to say no.  It killed me to say no to that---one of the basic things a mother does for a child.  I am sure she had no idea why she suddenly had to be thirsty.  Then, when she wasn't drinking enough, we kept urging water on her, and she didn't want it.  She must have thought we'd gone some strange kind of crazy, or become suddenly cruel.  It is so hard to think about that.

I hope Janey is well enough to go to summer school when it starts.  I think she will be.  It's a slow road, though, and it's made harder by her autism.  I can't explain why she needs to try to stand up straight, or why her stomach might still feel weird, or why in fact any of the past month has happened.  But she is a strong girl, and I know there will be a day when this is completely behind us.  I am looking forward to that day.

Autism and Appendicitis Pain - A Scary Combination

Almost everyone with a child with autism has noted that they express pain differently than other kids.  This might seem like an odd little quirk, but the events of the last month have shown me it's far from that.  Janey's reaction to the pain of appendicitis almost certainly contributed to her appendix rupturing, and her post-surgical pain reactions quite likely make the complications she experienced harder to treat.  If I can get one message across ever through this blog, this might be the one...DON'T ASSUME KIDS WITH AUTISM WILL SHOW PAIN IN A TYPICAL WAY!

I keep going back in my mind to the night we thought Janey was having a seizure and we called an ambulance.  Of course we don't know for sure, but Tony and I both now think that Janey's appendix burst that night.  She had a high fever, and we were taking turns checking on her all night.  When Tony checked on her in the wee hours of the morning, her arm was jerking over and over.  She was burning up with fever.  The EMTs quickly told us it wasn't a seizure when they arrived, and the ER staff felt the same way.  But it was something.  I think now it was a reaction to the terrible pain she must have felt as her appendix burst.

Neither Tony or I can remember for sure if the ER staff checked Janey's belly (I have learned "belly" is the technical terms for what we untechnically call "tummy") for pain.  Janey was not presenting like someone with appendicitis, and she wasn't being co-operative.  It took 6 people to get a throat culture on her.  The ER doctor assumed she had some kind of virus, and sent us home.  Her blood wasn't tested, but even if it had been, that might not have shed any light on things, as when it was tested the next night, her white count was normal.  The key here again was how she was showing pain.  If she had been screaming, or if she had been able to say "My tummy hurts!", I think some red flags would have gone up.

Even once Janey was admitted to the hospital, after we took her back the next night, she wasn't showing the pain you'd typically see in a child with an appendix that had already burst.  Tony and I could see she was far from herself.  The big thing we saw was that she wasn't moving.  She lay in the bed in a very, very fixed position.  I think moving was extremely painful for her, so she just didn't move.  I remember a group of doctors coming in and one of them shaking her bed a bit, and when she didn't react, saying something like "Well, she doesn't have peritonitis" (an inflammation of the wall of the abdomen) because she didn't react to the shaking.  She didn't react, I think, because she was determined not to move at all.  She had on her face what I call the stoic look.  It's a look I see a lot on her, a look where she seems to just be retreating into herself and doing everything not to let the outside world affect her.  It's not a look that betrays pain.

This is an example of how typical kids are asked to measure their pain.

Thankfully, so thankfully, the CAT scan done eventually on Janey showed her burst appendix clearly.  But her atypical reactions to pain were still an issue after the surgery.  At first, she was just given morphine around the clock, but the days went by, sometimes nurses would ask me "Do you think she's in pain?"  I knew we didn't want to give her too much morphine, that too much could slow her recovery.  But so often, I just didn't know, even myself, if she were in pain.  It was so hard to tell if she was crying because she hated the IVs, or was upset to be in the hospital in general, or if a video had scared her...it was so tricky.  We could ask her "Do you have a hurty feeling?" and she would echo it back "Do you have a hurty feeling?"  If we asked her to point to the hurty feeling, I think she often took that as a cue she was supposed to point to SOMETHING, and sometimes it was her belly but other times the pointing just seemed random.  Thinking back, I wish I'd worried less about how much morphine was getting and erred more on the side of assuming she was in pain.  But I wish even more she could express the pain in a way that was easier to understand.

I am glad Janey and all of us have only one appendix.  I will not be faced with this particular situation again.  But speaking to all the families of an autistic child still possessing an appendix, my advice would be this----If there's a chance it's appendicitis, push for imaging to be done.  Ultrasounds didn't show the problem for Janey; she needed a CAT scan for that, but that might just be her.  Make sure the medical professionals know that how much pain your child seems to be in should NOT be used to rule out appendicitis!  This would also apply, I am sure, to any other potentially serious cause of pain.  I hope none of you ever have to use this knowledge.  Best of health to all of you.

Part 8----Healing Slowly

Today, the surgeon said Janey's bowel sounds were NORMAL---a wonderful thing to hear.  It was the first time in two weeks that has been the case.  It was also the first time we heard the work "discharge" in terms of her going home, not with a date attached, but she  said something like "Now we can think about discharge someday!"  We are feeling cautiously optimistic, although the surgeon made sure we understood it's still a long, long road to recovery, and Janey would not be herself for a long, long time.  She  said Janey has had one of the most serious conditions that a child patient can have in a hospital, in terms of length of stay and time to recover.  But we are finally talking recovery, not just crisis after crisis.

Maybe with the getting somewhat better, Janey is acting more unhappy.   When she was so sick she could barely move, she didn't seem as sad as she does now.  I can think of only two  times she has smiled since she's been in the hospital.  She spends a lot of time just saying "Mama!  Daddy!" and making a sad whining sound.  It's hard to hear.  The big challenge is knowing how much of this is pain.  I feel like she's shown us that she has a huge tolerance for pain, and doesn't show  it in normal ways.  So it's up to us to figure that out.  She is able to have morphine when the pain gets bad, but morphine slows everything down and also people develop a tolerance to it after a while, so you want to use it sparingly.  We have seen the tolerance already, in that a dose used to get her to sleep almost instantly, and now it seems to help much less.

We have been trying to get Janey up and walking as much as we can, but walking tires her out to an amazing extent.  We  walk to the playroom, which is just a short walk about 10 rooms down, and once there, she is very, very tired, and slouches down in a chair alarmingly.  Walking back, she is even more tired and tries to go into other rooms and sleep in other patient's rooms.  It is hard to believe this is the same little girl who had endless energy and never, ever stopped jumping while watching TV.

Eating is the other challenge.  Janey is finally on a non-restricted diet.  She  can eat anything she wants.  She is still getting the IV nutrition around the clock, but of course we want to get off that eventually.  We got her to eat more lunch today than we had in a while----about 10 kernels of corn, 10 bites of tomato chucks  from salsa, a couple thin slivers of salami, a bite of cookie, a few bites of bread---actually a huge meal for her!  Eating is an area where I think a misunderstanding of autism is common.  Someone commented it's hard to get kids eating again that are picky eaters to start with, assuming that Janey would be one.  But she isn't.  She likes to eat a very lot, and eats a huge variety of foods.  As we have found to be the case here, everyone listened to what we said.  They put Janey on adult meals, so we can order more exotic foods than the child's menu would allow.

My biggest fears lately are about how this experience is going to change Janey, to maybe take away the things that were her sources of joy.  Seeing her have trouble even walking, or seeing her not enjoy food--it's sad.  Those were her "normal" joys.  I have to admit I've had some moments of thinking this all just isn't fair.  Within a year, Janey has first been hospitalized for autism-related issues for a long time, and now, for physical health reasons.  Wouldn't one or another be enough?  I try hard not to get discouraged, to feel put-upon, to cry much,  at least until I have a day alone, but at times, I am having a hard time with it all.

The big bright spot, one I should have probably opened with, is that last night I was able to get away for a few hours to see Janey's brother Freddy graduate from Boston Latin School, class of 2015.  It was a wonderful ceremony, and I am so proud of my newest high school graduate.  Tony had to stay here, which caused me some tears, but my parents, Freddy's brother William, his aunt and uncle and some dear family friends who have known Freddy from the start were there to cheer for him.  It is not how I ever pictured his graduation night being, but life is often not what we pictured.  Watching him get his diploma was one of those moments when life was more than I ever expected.  And Janey is getting better.  She will get better.

Janey's burst appendix story---Part Four

The story continues.  There isn't as much to report this time.  Janey is still in the PICU.  Yesterday, she had the ultrasound to see if she had an abscesses, and thankfully, she didn't.  It did show she is still very affected by the horrible infection she had after her appendix ruptured, and that her intestines are very stretched out.  But she didn't need to have drains put in, so that was great.  She has had a fever most all the time---it goes down when she gets the IV Tylenol, but then goes back up as it wears off.  It's not a high fever, but it's not great she keeps getting it.

We were waiting a lot yesterday for her to have a "pick" line put in.  I am not sure that's the right term, but it's a special IV line which she can get nutrition through, as well as all her antibiotics, and it could be used to draw blood, too.  As I've figured out about the hospital, there is a lot of waiting, and plans change.  From what I can gather, there is sort of an argument about whether she should have this line.  She needed the nutrition, so they are giving her a different kind that can be put in a regular IV.  She has a big bag of cloudy milkshake looking stuff going into her.  I guess the worry is that she might have a blood infection of some type, and that would not be a good thing with the pick line, or on the other side of the story, she might start being able to eat soon and the pick line would be overkill.

She did start moving her bowels yesterday, over and over and over and over.  It's amazing what she put out considering she hasn't eaten now for 10 days.  At first we were excited she was going, as it meant her digestive system might be recovering, but now the thought is that it might be a bit too much, and they are going to do tests regarding that.

She slept fairly well last night, after finally getting to sleep around 1 am.  I slept better too, at least in terms of a hospital sleep.

So---it goes on.  I did go home yesterday for about 4 hours in the afternoon and evening.  Tony and Freddy convinced me I just had to.  It was probably good I did, but I didn't sleep at home, and taking the subway and train both ways resulted in my net rest being far less than it would have been if I just stayed here.  But I had a few bills I really needed to take care of, and it was good to see my garden, which with our recent rain has gone from being very dry to being overcome with weeds. 

The boys have been incredible.  They have visited a lot, held down the fort at home,  and just been so much support to us.

Janey is a bit miserable this morning.  I think she's just tired of being here, and her stomach is hurting, and she's just not having fun. I can't blame her.

The plan for today is to see if she can eat, and to try to figure out if she has an infection.  Yesterday the plan was to get her back to the regular ward today, although I'm not sure if that's still the case.  I've figured out everything happens in the morning in hospitals, when doctors come around, and the rest of the day seems to be mostly waiting for things and just healing, which is fine.

I very much appreciate all your thoughts and prayers.  I am not much of a prayer myself, but I have done a bit of it too.  I would probably call myself an atheist, but the last few days I'm more of an agnostic, the kind of agnostic that hopes somehow someone is out there hearing my pleas for Janey.  But it's wonderful knowing how many people are thinking of Janey so much.  Thank you.

Janey's burst appendix story---Part 2

It's about 5 in the morning here at Mass General.  Janey is finally settling down after an ordeal I'll write about later, Tony and Freddy are sleeping and I am feeling rested after about 3 nice hours of sleep---not even being sarcastic there.  So I thought I'd write more of Janey's appendix story.

When Janey came back to her room after her surgery, she was of course very sleepy.  She also was having trouble keeping her oxygen up, so she was on an oxygen mask.  If she took it off, which she did sometimes, even in her sleep, her levels of oxygen would go way down.  If they got lower than 90, an alarm would sound.  That was eventually changed to 85, as the alarm was going off so much she couldn't sleep.  We got through that first night---Tony went home for a bit to sleep.  I got maybe an hour's sleep, but I was hyped enough that it was okay.  Our plan was for my friend Maryellen to pick me up in the morning and take me home for a while, probably until 4, so I could sleep at home and do a few vital house things.

I went home as planned, and didn't sleep right away, because I just couldn't.  My mind was racing and I had to do something to rest it---so I watered all my plants and planted some new hostas I had ordered.  I have found I always need a fairly obsessive hobby to keep me from going crazy.  Right now it's gardening, and it felt good to just indulge myself a bit.

Then I went inside and called Tony, and found out all hell had broken loose at the hospital.  Janey's fever had spiked to 105 under her arm, which is more like 106.  Way too high, obviously.  So they did an emergency chest and stomach x-ray, right in our room, to make sure there was not some big issue there.  There wasn't, except for expected things, so they put her on IV Tylenol (which for some bizarre reason is the most expensive IV drug you can imagine, and which my sister tells me many hospitals won't use at all, and which they had to get special permission to use here, and the IV nurse had never even heard of it), which worked to bring down the fever.

Maryellen drove me straight back to the hospital after hearing what was going on.  I am very grateful to her.  Janey had calmed down some by then, and was happy to see her   Except for some more fever spikes, not as bad ones, and some more struggles with her oxygen levels, the rest of that day was okay.  Tony went home to sleep, and I tried to sleep, but that night her oxygen was constantly going below 85 and setting off the alarms.  The nurses would come, but I would of course wake up and fix her mask.   I didn't sleep except for an hour or so.  I called Tony about 2 am and asked him to come back at 4, and when he did, I caught some sleep.

When I woke up, once again crisis had brewed, as her oxygen problems were concerning enough they did another x-ray, to see if she might need the ICU.  It was about the same as the day before, so they didn't.  My friend Christine came to help, and that was great---Janey was so happy to see her.  I was too, as I slept a bit more!  Then, again, crisis, as when Janey woke from a nap,  her pain was so much it was overwhelming.  She screamed in pain, and started gagging like she was going to throw up, and just looked like something very, very bad was happening.  It was so scary.  She was given some morphine and finally she calmed down and slept some.  We had another episode like that when she woke again.

Because her oxygen was being such an issue, it was important for her to sit up and to walk.  So even with all the pain, a few times we got her sitting in a chair and we once did a walk (with tons of help) to the Child Life room down the hall.  She got worn out by that and we took the wheelchair back.  The Child Life room was amazing.  When Janey is better, I think she will love it.

Freddy came last night to help out in the night.  We all three stayed here.  But even with that, Janey constantly took off her oxygen mask, and when she did, the levels would drop to scary levels---as low as 77, which if you have a child with asthma, as I had two, you know is one very low level.  A few hours ago, Janey got enough of her old spunk back that she was fighting the mask extremely hard---taking it off and tossing it, pushing it off constantly.  The great nurses tried everything---using nasal canulas instead, trying different way to put on the mask, but it just wasn't working.  Janey was getting dangerously little oxygen.

So, finally, we had to put her in restraints.  That was hard to do.  By the end of the about hour it took to get that done, the nurses had gotten an advanced degree in Janey Strength and Determination.  She managed to get out of the restraints several times before we got them right, she turned her head quickly to try to bite a few times---one of the nurses said "You have a special kid there"  He wasn't saying it in a bad way---just saying what is true.  Janey is not easily kept from what she wants.  Now, though, at last, she is getting the oxygen she needs to recover.  One of the surgeons came in to tell us how sorry he was they had to use the restraints.  I told him, and meant it, that we know they did everything they could to avoid it.  Janey's recovery comes before anything, right now.

And here we are, for the foreseeable future.  We will not being going home very soon.  She can't eat yet, she can't walk without support, she can't breathe without oxygen help.  She is in a lot of pain and still spiking a lot of fevers.  This is going to be a long haul. 

Janey's autism is affecting every part of this medical journey.  It made it hard to diagnose what was wrong, and it is making it challenging to treat her.  I am so pleased still with the care we are receiving.  Mass General will be Janey's hospital for life, I am pretty sure.

We are tired, we are still in shock but we are grateful, to still have our Janey, to have all the great care here and so very much, for our friends around the world that care about Janey and support us so much.