Oxygen masks are hard to put on

 We've all probably been reminded of airplane rules, how they tell adults to put on their own oxygen mask before their child's one.  It's part of a series we get told as autism parents, and I don't think I'm the only one that can get annoyed by them.  The reminders feel like they are saying "You are responsible for your own burnout, your own tiredness.  You need to take time to put yourself first.  That's on you"  And I don't even need to explain to those of you who are living this life the flaw there---how impossible it can be to get even a minute to take care of yourself, how none of us can just say "Okay, today is for ME!  I'll call the handy available affordable babysitter, who will be right over, and I'll go out to the spa and to lunch and to the museum and a hotel overnight and then I'll come home and be a better autism parent, because I did the right thing and took care of myself!"  Ha.  HaHaHa.

I say this because I think you'll all get why over the past 9 or 10 years, I ignored a lot of signs my health was worsening.  I had a few diagnoses already---NASH liver (non-alcoholic liver disease), Sjogren's syndrome (an autoimmune disease that causes dry eyes and mouth and extreme tiredness) and hypothyroidism, along with smoldering diverticulitis.  I figured all of those were more than enough to explain why I was so extremely tired all the time. I assumed they were also why it was becoming increasingly hard to concentrate or multi-task, and even why I had pain in my muscles and in my bones al the time, every minute, always.  When a year or so ago my vitamin D was extremely low, low enough that several doctors said they'd never seen a lower read, I just took more D.  When, over the course of the past 9 years, I had blood test after blood test that showed I had high calcium levels, I didn't investigate and neither did any doctor.  Those tests were never the focus of my blood tests.  Instead, my primary care doctor constantly tried to get me to take cholesterol drugs, which I weren't convinced were safe for my liver.  Finally, I decided to switch doctors.  I was feeling increasingly unheard.

I saw my new doctor, he ordered blood tests, he saw my calcium was once again high, and miracle of miracles---he ordered one more test, a test of what is called Parathyroid Hormone.  My PTH level was sky high.  That was all it took.  He diagnosed me with Primary Hyperparathyroidism.  

For those of you who don't know what that is---in a nutshell, it's when a parathyroid gland (or two or three or four---you have four, located on the back of your thyroid) goes haywire.  It tells your body you don't have enough calcium, when in reality, you have too much calcium.  Your body goes crazy trying to get more calcium, and takes it out of your bones.  The result is the symptoms I'd been having, and more---extreme tiredness, muscle and bone pain, low Vitamin D, confusion---and there are many more. Do a quick Wikipedia search about it and you'll learn a lot.  And PLEASE---the next time you have blood tests, check if your calcium is high, even a little high.  If it is, ask for a PTH test.  Right away.

There is only one cure for hyperparathyroidism---surgery to remove the haywire gland.  I had all kinds of imaging tests to try to locate exactly which gland had gone bad.  They weren't definitive, so I went in for exploratory surgery.  Luckily, the gland was found quickly.  The surgery took about 4 hours, took out the bad gland, I was in the hospital only one night, the main pain afterward was just from having had a breathing tube, and as parathyroid hormone has a half life of only about 4 minutes, by the time I came out of anesthesia, I was cured.

And, incredibly, within days, the pain I had felt non-stop for years and years and years was GONE.  Not just better, but gone.  My confusion was greatly improved.  I felt just...better.  Better like I had thought was no longer something I could feel.

My point here?  Well, it's partly just to educate people about hyperparathyroidism, which is sadly underdiagnosed.  But it's more to say---we as autism parents, sick or not, undiagnosed with some surprise disorder or not, just can't put on the oxygen mask easily.  We are used to being tired.  We put our kids first, not because we are saintly self-sacrificing parents, but because we don't have a choice.  Our kids need us.  They need us 24 hours a day, 7 days a week, 365 days a year.  And if our kids have severe autism, by any name you choose to call it, as Janey does, this will not change, not for our whole lives.  I could have easily gone the rest of my life without the surgery, without the diagnosis, because my life simply didn't leave me the energy, the time or the help we needed to get the diagnosis.

Even to have the surgery, Tony and I had to ask our sons to take time off of work.  They did, willingly, and they took excellent care of Janey.  But that is not something we can do except in emergencies.  If they had not been able to do that, or if I had been a single parent---I don't even know how I could have had the surgery.  

We need a structure in this country to provide REAL help for people caring for those with severe autism.  We need it NOW.  It exists in most countries.  I know that from my hobby of exchanging postcards with those around the world, and from hearing from other parents through this blog.  We need it not just so we parents can get a break, but so we can live.  Literally, live.

Janey did not do very well with my surgery.  The day before the surgery was her last day of school.  Usually, we would have talked to her a lot about this, and had a busy day set up to make up for the lack of school the next day.  But we were pretty distracted.  So, the day of my surgery, she had no school, and Tony and I both were gone from the house---something she is supremely unused to.  She had fun with her brothers, but then the next day, again, Tony was gone getting me home.  When I got home, I had to stay away from her for a few days.  She likes to jump on me with enthusiasm, and my incision made that unsafe.  The incision was also big and scary looking, like someone had tried to cut my throat (it's already a lot better looking now) The surgery was on a Thursday.  By Sunday, Janey was in the worst shape mentally we'd seen in years.  She was screaming non-stop, all day.  She frantically took shower after shower, asked for ride after ride, bit her arm and wailed and was so unhappy we worried she'd broken a tooth or something.  It took me getting up the strength to go for a ride with Tony and her and me finally doing what I should have done from the start---explaining over and over what had happened, telling her my hurty place would get better soon, giving her treats and spending calm time with her--to get her calmed down.  She still is avoiding me when she can, quite bothered by the scar, but much better than that awful Sunday.  We were given a vivid reminder we can't ever take the years of vastly improved behavior and happiness she has for granted.  We were also given a vivid reminder of the challenges of self-care.  Caring for ourselves as parents isn't a zero sum game.  Caring for ourselves often results in less time to care as well for Janey as she needs.

And so---we are into another summer.  I hope it's starting out well for all of you.   Good health to you all, and check your calcium!

Summertime, and the living is...not so hard

Yes, I wouldn't call the living easy, but it's closer to easy than it usually is with Janey.  Here's an account of a typical day this summer with Janey....

8 am ...  Wake up.  Janey has shown that left to make her our schedule, as I pretty much do with my kids in the summer, she is a night owl.  She's been staying up late and wanting to wake up late.  Actually, thinking about it, 8 am is not that late, but in our family of mainly larks, it is.  

8-9 am  Get ready for summer school.  I tell Janey it's a school day as soon as she wakes up, along with any other vital information about the day.  The problem with that is that she's always ready to move on to the next part of the day, so if it's a school day, she wants to be out waiting for the bus.  I delay her as long as possible, but we always wind up waiting for the bus long before it actually comes at 9.  Some days, there's screaming and arm biting as she gets tired of waiting but it's too late to go back in, but most days, it's been okay.  I sing some special bus waiting songs, mostly songs from Oklahoma, which for some reason I've sung each summer as we waited for the summer school bus.  I comment on each car or truck or bus that goes by, using my excited voice, which tends to keep Janey happy.  And then the bus arrives, and she hops on quite readily, to head off to the black hole of summer school.

9-3  I call it the black hole of summer school as I have little idea what she does there.  Her teacher does write now and then, and I know there's ABA and going in the sprinklers and breakfast and lunch, but of course Janey tells me nothing about her day, not a word.  That is a tough part of having a minimally verbal child.  Her life when not with me is a blank to me.  However, she seems happy!  I do dishes and laundry, and garden and play Scrabble on Facebook and try to make myself clean, and usually sneak in a nap.

3-4  The Waiting For Daddy Hour   Tony goes into work very early in the summer, so he can get home around 4.  Janey knows EXACTLY when he should be home.  I don't know if she can tell time somehow, or is just a very good judge of how long time chunks are.  But every day, about 3:45, she asks to "go see Daddy", which means walk down the street to meet Daddy coming home from the train.  If Daddy is late, or takes the train that comes in a different place, it's not very pretty.

4-6   This is Janey's favorite time of the day.  It's when Daddy does one of three things with her, sometimes all three.  He takes her for a ride in the car, a ride to nowhere, just cruising around and listening to mix CDs he has made for her.  She's become a huge fan of The Animals and The Monkees, and it's mostly those they listen to, with a few other songs thrown in---some Black Sabbath, some Beach Boys.  If they aren't riding in the car, they are cooking together.  Janey's favorite is "soup", which means kale or collard greens fried in oil and topped with hot sauce.  The third activity is a fire in a little fire pit Tony got.  We of course watch her extremely closely during this activity, but she adores looking at the fire.

6-9 (or whenever) This is video or TV time, combined with YouTube and iPad time, with occasional snack time or brother time thrown in.  Janey is in love especially with one movie this summer "The Little Mermaid 2:  Return to the Sea"  I am not sure what the appeal of it is, but we know it by heart.  There's also a lot of Word World and some Little Bear thrown in.

9 TV unplugged time, bed time.  We have to unplug the TV, as when Janey gets tired, she gets dissatisfied with shows after about a minute.  Most of the shows she likes are on Amazon Prime, which we have to use a password for, as otherwise, Janey can and has bought shows that aren't included in our membership.  So we are called upon to enter the password every time she gets tired fo a show, even if she just wants to watch a different episode of the same show.  We do let Janey have the iPad in bed.  It doesn't keep her awake, as once she's ready to sleep, she sleeps, instantly.  There is no drowsy period with her---she's wide awake or fast asleep.  Some nights, she's up until 10 or 11, but I'd say 9:30 is a good average.

So....we are hanging in there.  I left out a lot of times that there is screaming or arm biting, not just to make the days look better, but because these episodes are far shorter than usual lately.  We can edit them out of our days because I'd say the longest they have lasted all summer is half an hour in a row, which in the scheme of things, is very short.

I think we've been catering to Janey, to how she likes things, more than other summers.  I am sure this has to do with her time in the hospital.  We needed to keep her fed and keep her calm there, and once she first came home, at all costs.  It was a life or death matter, and I am not overstating things to say that.  And I think we realized, after doing that for a while, that we were all happier if Janey was happier.  We don't bother as much to say no to the little stuff.  If Janey needs a ride, if Janey wants to wait for the bus early, if Janey desires 5 viewings in a row of Little Mermaid 2, who cares?  If we are creating a monster...well, we aren't.  We are creating a happy girl, and one who because she is happy is making us happy.  We've done more family drives and had more of those spontaneous little good times than in years this summer.  I'm going to write more about some thoughts about what I'd call a new approach to life with Janey, but for now, I'm going to go meet her bus, cut up cheese into thin slices while she watches, the only way she likes cheese, put on a show and then change it if she needs it, and walk to meet Daddy.  And I'm glad to do it.

Tough decisions regarding medication.

Today, we took Janey for her follow-up appointment with the surgeon.  It feel odd to be back at the hospital, to be at a place that had been almost home for 18 days and that we hadn't seen since and might (hopefully) not have to see again for a while.  It was a bit overwhelming.  Janey's appointment was good.  She's not all the way recovered, and her weight is a concern---she's lost about 20 pounds from her baseline when this whole bit started---but she is on her way.  It was nice to see the surgeon, and have her see Janey again.  I felt once again very glad we had chosen Mass General for her care.

The tough part lately has not been Janey's physical health, but some decisions we need to make about her autism, specifically, decisions about her medication.  I haven't written about this on here before now because I've been waiting to see how things were playing out.  Janey has been off any psychiatric medication for over a month now, from the time she had her surgery.  It started because she couldn't have anything by mouth for a while, and the medication wasn't available in IV form.  So we stopped it then because we had to.  However, we weren't eager to start it again at that point.  Janey was still recovering from a hugely major medical crisis, and she didn't have the energy to have any kind of behaviors that would require medication.  So---we decided to wait.

The strange thing was, for the first month anyway, that it made absolutely no difference.  Janey's negative behaviors, once she recovered enough to show her behaviors, was no different on or off the medication.  She still bit her arm, she still got upset easily and was obsessive, but it wasn't worse. And more importantly, her POSITIVE behaviors were better.  She seemed calmer, more connected.  She had a lot of wonderful smiles.  She looked at us in a way we hadn't seen in years.  It is hard to describe, but she just seemed more herself.  Both Tony and I remarked we saw a Janey we hadn't seen since she was 2, a pre-autism Janey.  And so we weren't in any hurry to put her back on medication.

The last few days, though, we aren't so sure.  Yesterday, especially, was a hugely difficult day.  Janey spent most of the day in a fury over one thing or another.  She obsessively asked "Go to Maryellen's house?", my friend Maryellen's house she loves to visit.  However, the day before, we had gone there, and once there, Janey wasn't any happier there, and I am pretty sure she again wouldn't have been if I had actually been able to take her.  It was just an obsession of Janey's.  When she wasn't saying that, she was saying "Snuggle on Mama's bed!", which actually meant on her bed, and "Go under the covers!", which means, don't just sit there half on the bed, but act like we are about to go to sleep, do nothing else but lie there.  Which is fine at bedtime, but lately, since coming home, it's what Janey wants to do about half the day or more.

When we say no to Janey, she immediately, violently, gets mad.  Last night, she asked Tony for bacon, at around 10 pm.  He said no, and she screamed, screamed as loudly as you can imagine, "NO!  NO!  NO NO NO NO NO!!!"

Today, while waiting to see the surgeon, Janey got upset in the waiting room, and started screaming that piercing scream and then smashing her head with her fists, over and over and over.  And I thought---yeah, we are going to have to go back on medication.  But once I had a minute to think, I thought---were things better then?  She was on medication when we had the awful stay at Children's and then the 19 days at Bradley Hospital.  She's been on medication for the last 5 years.  Has it helped?  Sometimes it seems like it has, but it's hard to say.  It's really hard to say.

I think when I started to really question the whole idea of medication was after we saw the Lurie Center, when I started to realize that there was nothing being offered to Janey at all BUT medication, and when they started her on a NEW medication, and we were not given clear instructions on taking her off the old one that was similar.  Or later, when in talking with people at Mass General, we realized Janey was getting a time release version of her other medication, but since we crush the pills and mix them with water, she probably was getting the time release dose all at once.  Both times made me feel like we are playing with fire, that we aren't being instructed clearly enough about these hard core medications, that perhaps we should not be giving them to her because of that.

With a child like Janey, there is not much doctors or psychiatrists can do, I'm realizing.  In today's society, they have no respite, no therapies, no groups, nothing really to offer to a child with severe autism and a fairly severe intellectual disability.  So---they offer medication.  It's what they can do, it's easy to do, and they want to help, they really do want to help.  But does it help?  I don't know.

So we are left with a decision.  Do we put Janey back on medication or not?  Does it help anything?  Are the calmer times that happen off and on while she takes it just change, just times she would be calmer anyway?  Is it worth the potential side effects?  Can we figure out other ways to help her?  Can anyone?  I don't know.  We will see.  It's going to be a tough decision to make.

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.

Janey's burst appendix story---Part Six

When we left you in this continuing saga, Janey was off getting a CT scan to look for abscesses.  The CT scan was quick, and Tony went out to get a bite to eat when one of the surgeons came back to tell me that yes, it looked like Janey has multiple abscesses.  That wasn't exactly what we wanted to hear, but I am so glad they did look for them.  Her head surgeon came in a bit later and explained things to us more.  Janey had 5 abscesses.  She was going to need interventional radiology to put drains in them.  At the same time this was done, they would put in a PICC line to be able to give her nutrition, IV medication  and draw blood, without having to do lots more IVs.

Janey was taken down for the procedure about 2, strangely, a week right to the hour after she had the original surgery.  We signed more consents, and left as she was being put under, back up to her room to sleep (although I couldn't sleep).

The big question last night was whether I would go to her brother Freddy's Prize Night.  The night is the second biggest night in the six years at Boston Latin School, the school Freddy graduates from on Monday.  I have looked forward to the night for years, but never dreamt I would have to decide whether to go while Janey was in surgery.  After talking to the surgeon and to the nurses, I did decide to go.  Tony stayed here and promised to keep in touch with me by text, which he did. 

The night was wonderful.  It was held at an old church building on the campus of Harvard, a beautiful venue.  There was amazing music played by the string orchestra of the school, including a sad piece which of course set me to crying quite a bit, partly about Janey and partly from thinking of an era being over with Freddy.  My emotions right there were about as intense as emotions get.  Watching the prizes get given out was so interesting.  Everyone got a prize of some kind, and I was very proud that Freddy got two, both connected to his declamation (speech giving) skills.

Then it was back to reality.  Janey had come back from surgery while I was gone.  I saw her drains, which are a little scary to look at but not that bad.  They were able to drain 4 of the abscesses with 3 different drains.  One was too surrounded by bowel to be able to drain.  Hopefully that one will resolve on its own.  Janey was doing remarkably well.

Today, Janey isn't feeling quite as good.  Her fever is up a bit, which was sort of half expected, and she was in a bit of pain.  They authorized clear liquids, but she had just a sip of apple juice and later threw up.  Her stomach just isn't ready yet.

I have to say here how wonderful almost everyone at this hospital is.  The nurses on our floor are just plain amazing.  They are so kind, they care so obviously for Janey, they are knowledgable and competent and just...wow.  The surgeons have also been great, especially the surgeon who did the original surgery on Janey.  She listened to us, answered all our questions so well, and even remembered Freddy and answered me seriously and truthfully about going to his prize night.

And---Janey has been amazing also.  Overall, I can say there's been many times she's gotten far more upset over us saying no to a trip to the ice cream store than she has over major things here like having an IV put in.  She is alert and watches everything, and is learning new terms.  Today, she said "Want to call the nurse?" as I picked up the control with the nurse button, and she has started calling her stomach area her "belly" as she has heard them do.

Sleep is the toughest thing.  We got some last night, but I am living in a constant state of tiredness.  Often, also in hungriness, as I don't eat the room since Janey can't, and it can be hard to find time to sneak out and get something to eat.  This may be the most effective diet I've ever been on.

Writing in this blog and hearing from all of you truly is keeping me going.  I need this writing more than anything.  I don't think I'd ever remember these days clearly or be able to work through them in my head without it, and it's a fantastic bonus to be able to share Janey's story.  I hope none of you ever have to have your child with autism in the hospital for an extended time (or any child at all!) but I hope if anyone does, my writing will help a little.  So I will close for now, until part seven......

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 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.