The Scariest Hour

 Well, once again, it's been a while!  I think often about writing a post here, but it seems often thinking is as far as it gets.  But an experience a few months ago has been on my mind constantly, and I guess I'm ready to write about it.

In early October, COVID finally hit our family.  I was starting to wonder if we were one of the rare families with some kind of immunity, as Janey had been going to school unmasked and Freddy to work unmasked for a long time at that point, and both of them had been exposed without getting it several times.  But, it turns out, we aren't immune!  I'll say in advance we were lucky---aside from what I'm going to write about, we got off a lot easier than a lot of people, and we know how fortunate that is.  

Freddy, the younger of Janey's two older brothers, came home from work on a Friday very sick and finally we saw the two lines of a positive test.  Tony felt sick on Sunday, and again, two lines.  I woke up Monday morning with quite a sore throat and got my own positive result.

As Monday wore on (Columbus Day Monday, so Janey was home), I felt sicker and sicker and sicker.  My fever went up to over 103 and wouldn't come down, and I was shaking.  My oxygen started dipping.  I have several fairly serious pre-existing conditions, so I knew my risk level was high.  Around 3 in the afternoon, I decided I better call my doctor's office, and they told me I should go to the ER.  As I processed that, trying although my thinking was foggy to decide whether to call an ambulance or have Tony drive me, Tony started suddenly getting worse.  His fever spiked, he started to shake and the oxygen monitor was showing some truly alarming numbers.  He's an insulin dependent diabetic, so again, high risk.  

And there we were, at the moment we've always known could arrive.  Both of us were potentially very dangerously sick.  But there was Janey.  We could not, simply could not, both go to the ER.  If one of us went, how could the other, just as sick, take care of Janey?  Freddy was too sick to help, and William wasn't home.  Although I am blessed with wonderful friends, they are not able to care for someone with Janey's level of needs, and even if they could, the local friends who I can count on for almost everything else are all over 60,not in need of being exposed to COVID.  

We sat there, or lay down there, shaking and fearful.  We tried to discuss options, with minds that were not at their best.  We had no idea what to do.

Freddy had gotten some Tylenol earlier in the day for himself.  I don't like to take Tylenol at all due to my liver problems, but in my feverish state, knowing Motrin hadn't lowered my fever at all, I decided to take a dose.  Then we just waited.  Tony's oxygen slowly came back to less scary numbers.  I slowly started to feel less like I was going to die that moment.  My fever went down to 102.  We both stopped shaking.  And, without really consciously making a decision, we both decided to stay home, to risk waiting it out.

It worked out.  We had a rough night, but Tuesday was better.  We were both still weak, had sore throats, were coughing that COVID signature dry cough, but we were okay.  We tested Janey, who tested positive also (with a very faint second line) and we of course kept her home that week.  She never really got more than mild cold symptoms, and Freddy also got better quickly.  William never got sick (he's better than any of us with masking)  Now it's mostly just a scary memory.  I am still having a lot of tiredness and some brain fog, but I know we got very lucky.

But that hour...wow.  It's what it all comes down to, isn't it?  It's what all of us with children like Janey fear---that there will come a day we can't care for her.  Mostly when I think of that time, I assume it will be when we are old (hopefully) and we die.  But the horrible hour that Monday made me see that it could be before then.  

I don't know what the solution is here.  Even if we did have respite care, this wasn't something we could have planned ahead for.  We have two adult sons in our house---but in this particular case, they couldn't help.  I honestly, truly don't know what we would have done if we both got worse.  All I can really picture is taking Janey in the ambulance with us.  We would have figured out something---that's what we as parents do.  But it's where this particular parenting life is so scary.  There are so few people that are able physically and mentally to care for an adult with a toddler's level of function, and so few people that we as wary parents of a very vulnerable person can trust with our beloved child.  I know you fellow travelers on this path get that.  I guess we all have to just hope for health and long life, and try to push down the fears that have been keeping me up nights lately.

Grateful as well as angry --- a pneumonia story

It's Friday morning, and Janey is home and fever-free, and I am finally sitting down to try to make sense of the last few days.

When I last wrote, Monday, we had been through a clinic visit and an ER visit, without any answers. Another clinic visit Monday night, another temp at a low point just then, another wait and see.  Janey's fever kept getting higher as Tuesday rolled along, even with Tylenol.  She had an appointment set up for 3:45 at the clinic, but when I took her temp, it was again showing up as 106.  I called the clinic and asked if we could be seen sooner, and they said to come right in.

Finally, we saw Janey's own pediatrician, a doctor I like more every day.  Before she came in, the medical assistant took Janey's temp under her arm, and it showed up at 99, which I knew was not accurate.  Janey was screaming and moving around.  Then a couple people came in and took a nasal swab for flu.  Again, we had to hold her down.  When Janey's doctor came in, I pulled out the crazy old forehead thermometer and took Janey's temp again---and again, it showed 106.  The doctor was startled.  We all agreed it was probably reading a little high, but at her request I took my own temp with it and that was normal.  She then took Janey's underarm temp, with us all holding her down, and it showed 103, which translates to 104 as you add a degree for under the arm.  Finally, someone was seeing that Janey really did have a high fever.

At this point, Janey's skin looked odd---mottled and pale.  She was coughing an increasingly deep cough.  The pediatrician made the call to have her taken to the ER by ambulance.  As we were waiting for transport, the flu swab came back, positive for influenza type A and B---both types.  The ambulance showed up and we took a siren-filled ride to Mass General.  Freddy was with us, and he rode in the front.

So---back to the old Mass General ER, site of absolutely no help the previous Saturday night.  But I knew it was the gateway to great care, if we got admitted.  The plan initially was not for that, though.  A hugely arrogant seeming doctor came in, announced he was the "big boss" and did a quick exam of Janey, and left saying in a sing-song voice "not so bad, not so bad"  The plan was to have a chest x-ray, give her some fluids, do some blood work and send her home.

Janey cooperated for the chest xray in a way that was truly amazing.  She had to do things like hold onto a bar above her head and lean forward and scoot up on the bed, and she did all of them.  I was shocked at her understanding and cooperation.  The chest xray came back showing she had pneumonia in her lower left lobe.  The blood work showed a low white blood cell count.  And after a change of shift to a different "big boss", Janey's fever started to come back up.  She was shaking violently.  It wasn't time for more Tylenol or Motrin yet.  And finally, around 9, we were told she would be admitted.

It took until about midnight to get into a room.  The time in the ER felt like purgatory.  Freddy left around 5, Tony got there around 7, but there was only one chair in the room, and he had barely slept the night before and worked all day, so he went to the car to sleep.  He came back in around 10 as we waited for a room.  Janey was looking sicker and sicker.  Finally, we were taken up to our room.

Going back to the pediatric floor felt bizarre.  We had spent nearly a month there last May with Janey's burst appendix.  It felt like a homecoming in a way, one we had never wanted to come back home to, but I knew finally we would get some good help.

That night, Janey's fever spiked very high again.  She was put on IV antibiotics.  The next day, we were able to talk for quite a while to the same doctor that had been the one who broke the news to me that Janey's appendix had burst, last May.  He, as well as everyone there, was great---listening to us, being respectful and kind to Janey, taking into consideration her autism at all turns and giving her wonderful care.  Finally, on Wednesday afternoon, she had her last fever.  Yesterday, it was decided what antibiotic to send her home on (one that says in the instructions "used to treat a variety of bacteria infections as well as anthrax and the plague", so it's pretty hard-core!) and in the afternoon, with Janey looking incredibly better, we were released.  Strangely, when they had repeated twice the flu swap, it came out completely negative, so the conclusion was she had some unknown viral infection, but the main problem was the pneumonia.

I have been thinking non-stop why, even after the whole appendix ordeal, it took from Saturday till Tuesday for Janey to get effective care for a very high fever and pneumonia.  Part of it is just that I've realized it often takes anyone a while to get treated.  So many illnesses resolve on their own, and I almost feel like it's a plan in the medical world to let things ride a bit and see if they get better.  But part of it is her autism.  I pinned it down to two crucial events/reasons...

The first was the Saturday visit to the urgent care clinic, when Janey resisted her temperature being taken under her arm and the decision was made to not take her temp at all.  I KNOW her temp was extremely high then.  Her pulse was 250, which even if that was somehow off a little, is extremely high, and she felt to be burning up.  In defense of the doctor that saw her there, she did realize Janey was pretty sick, and put her on antibiotics (ones that weren't strong enough for pneumonia, we were later told, but would have treated strep throat)  But I think if she had had a good temp taken, it would have shown a high enough temp that we would have been sent to the hospital then.  The feeling was---don't force her to get her temperature taken and "upset" her.  Well, that is my fault.  I knew it needed to be taken, but I didn't insist.  We all fall victim to not wanting to upset her.  But---the same standard has to be used for Janey's medical care as any other child's care.  If someone shows signs of a terrible fever, they NEED to have their temperature taken.  Maybe not at home, but it needs to be taken in a medical office, and recorded.  That was the first fail.

The second fail was the first ER visit.  What a joke that visit was.  Janey's fever was down, and I was not listened to.  I tried my damnest to voice that Janey does not show illness or pain normally.  I wanted blood done, I wanted a chest xray.  But the arrogant doctor (a different arrogant doctor than the second time), despite what I was saying and despite the fact that the ER last May had missed the first time a burst appendix, which you would think would make them extra careful, seemed to assume that I was being an anxious parent, that Janey was just plain fine.  That is where the autism comes in.  Janey was ACTING fine.  A typical kid of 11, after being terribly sick all day, would be able to explain how she felt, how her lungs felt, how scared she was.  But Janey, when she felt better, acted fine.  She wasn't feeling hugely sick right then, and she has no understanding that that might be a temporary lull.  And I didn't press hard enough, I guess.  So---it took from Saturday until Tuesday night for her to finally get the right antibiotics to start truly helping her.

I am left feeling a few things.  One is angry.  I am angry that yet again, Janey's autism prevented her from getting timely care.  Another is grateful.  We love Janey's new pediatrician, and once she was able to see how sick Janey was, she acted very quickly.  She communicated with the hospital and with me, and she was firm in what she said Janey needed.  We are also grateful for the wonderful care on Ellison 18, the pediatric ward at Mass General.  Many of the doctors and nurses remembered Janey well from her last visit!  It was great to have Daisy as a nurse again (shout out to you, Daisy, who sometimes reads my blog!) and the other terrific nurses.  We hope we'll never be admitted to a hospital again, but if we are, it will be Mass General, even if we aren't crazy about the ER.

And now, a day of rest.  Tony is home to help with Janey---another week of mostly missed work for him, but luckily he has enough time saved up.  I could write on with more and more thoughts and happenings of the last few days, but for now, I'll close, and take another nap.  And thank all of you for your kindness on the Facebook page---your thoughts, prayer and comments are what keep us going a lot of dark days.

Autism, Communication and Being Sick

Janey is sick.

In her early years, in fact, until the whole appendix ordeal, Janey was rarely sick.  But lately, that seems to have changed.  She missed a few days of school in December due to a bad cold, and now, she has something else, maybe the flu.  She had a little cough last week, not enough to have to stay home, but on Saturday, she seemed worse.  Around 3, she got rapidly sicker. She was shaking  a huge amount and felt extremely warm.  We couldn't find the thermometer that works for her (she won't hold one in her mouth), but she was sick enough we took her to the urgent care clinic.  They ALSO didn't have a forehead thermometer, but it was obvious she was burning up.  Her pulse was 250, and she was very lethargic.  She wouldn't open her mouth, but her ears were fine.  The doctor decided to put her on antibiotics, with the thought she probably had strep.

Our thermometer.  Accurate?  Not sure...

We got home, and I found the forehead thermometer.  And took Janey's temperature.  And was shocked by what I now know must have been a faulty reading.  It was 107.  I am told that if she was really that hot, she'd have been in a coma or something.  I took it again a minute later, and it was 106.  I took mine, and Tony's, and Freddy's, all of which read normal.  I took Janey's a few more times---over and over, 106.  I called the nurse line.  They told me to take off Janey's clothes and give her a tepid shower, and call them back in half an hour.  We had given Janey Tylenol just before I took her temp.  I did as instructed.  In half an hour, Janey's temp was 104.  The nurse told me when I called back to take her to the ER.

I hate emergency rooms.  No matter how good a hospital is, the ER seems like the weak link.  The ER was the place that didn't even touch Janey's belly, that we can remember, when it turned out that her appendix has probably already burst.  But I was scared.  I'd never seen a fever that high.  So Tony drove us to Mass General.

I don't like ERs any better now.  By the time we got there, for whatever reason, Janey's temperature was normal.  She was being herself, screaming and then being cheery and lively.  I tried to tell them about her fever just a bit before, but I honestly think they thought I was making it up.  I felt like screaming "Yeah, I came here just for fun.  No better time than an ER on a Saturday night with an autistic kid.  Good times, good times"  They gave Janey a very minor exam and sent us home.

Yesterday, every time the Tylenol or Motrin ran out, Janey's temp was back up to 104 or so.  She has a dry cough and she slept most all day.  Today I will call for an appointment at her regular doctor's office.  I hope they listen to me.  It's very possible she has something viral, a flu, that will just run its course.  The ER doctor did manage to look in her throat and see it was fine, so it's not strep.  But the point is, I don't know and she can't tell me.

I used to be a lot more laid back about illnesses.  But when you have a child with a burst appendix, in the hospital for almost a month, a child that presents hugely atypically, even with her blood tests---you get scared.  You doubt yourself.  Janey, along with many kids with autism, doesn't react to illness in typical ways.  I do wonder if this is even on a physical level as well as emotionally.  She was almst never sick for so many years, even when other kids in her class got sick.  I think her body overreacted to any virus or bacteria, and kept any symptoms from showing.  Even now, I think when she does get sick, it takes a pretty strong strain of whatever to lay her low.  And she can't accurately tell me what hurts, or if she has odd feelings.  For all I know, she always hurts or has odd feelings.  I certainly hope not, but I don't know.

So, we fumble on.  I hope Janey's better today.  Right now, she is peppy, and after taking Motrim, fever-free.  But who knows?  We will keep on trying to make sure she gets proper health care, and we will try to educate medical professionals on the reality of life with low-functioning autism.  It's all we can do.

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 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.

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.

Probably not a seizure

This is one of those posts I'm writing more just to for myself than anything, to record while it's still fresh in my mind how things went down.  I'll start by saying that Janey should be fine, that we don't think know she actually had a seizure, but that we had a scary night and she is still pretty sick (she's fast asleep next to me as I write)

The night before last, Janey slept almost not at all.  She finally went to sleep about 2:30 and woke at 4:30.  She seemed fine when she woke up, as she often is after not sleeping, and I decided to send her to school, as she has often done well at school after not sleeping.   And I need a nap.  So off she went to school.

Her great teacher emailed me several times during the day, telling me that Janey was very sleepy (I had written her to let her know how little Janey had slept).  They woke her for lunch, but she was angry about that, and woke her again for the bus, and I guess she got furious then.

When she got home, I realized quickly she had a fever.  She very, very rarely gets sick, and when she does, it's usually a mild cold.  But this was quite a fever.  Her temp. was going up and down but around 103-104.  I gave her Tylenol, and then decided to call the doctor on call at the Lurie Center.  This was because the medication she had started taking (and which we are now taking her back off, Abilify) has a rare side effect of high fever and stiff muscles that can be very serious.  I talked to a nice doctor who said it didn't sound like that is what she had, and to see how she was in the morning.

Janey slept very, very sounding all evening.  So soundly I got nervous, and tried to wake her by loud noises and then putting some water on her leg, and finally did wake her enough to have her have a drink and to see she was still lucid.  But she was certainly sleepy.

At 2 in the morning, Tony woke me up.  He had checked on Janey and she was shaking.  The shaking was like nothing I've seen before.  It was rhythmic, and just in her right arm.  As I watched for a few seconds, it seemed to spread to her leg now and then.  I decided to call 911.  I wasn't completely panicked, as I know fevers can cause seizures and that autistic kids are at a higher risk for seizures, but I was scared.

The ambulance arrived quickly, and the EMT saw the end of her shaking.  It had gotten to be less by then, and they said it didn't look like a seizure, just shakes from a fever.  Janey and I got in the ambulance and I asked them to take us to Mass General Hospital, as that is the hospital associated with the Lurie Center.

In the ambulance, Janey was very, very hot.  To cool her down, they put an ice pack behind her head.  Her oxygen levels weren't great, and they tried to give her oxygen, but she pushed it away violently, which was actually kind of good to see.

Mass General has a little section of their ER just for kids.  It wasn't busy, and we were seen quickly.  The resident who saw us did a basic check on Janey, but Janey wasn't having any part of having her throat looked at, so she decided to wait to talk to the attending doctor to see what to do next.  When that doctor came, he attempted to look at her throat also, and she went crazy.  They called everyone in, and finally, after a few attempts with six adults holding her down, they were able to do a throat culture, which came back negative for strep.  They made the decision not to check her urine, as since she is not toilet trained, that would involve a catheter.

We were of course most concerned about what we thought was a seizure.  The doctors said that usually after a seizure, a person is extremely out of it, and that was not the case with Janey.  She talked to the EMTs---actually talked to them amazingly well.  I was grabbing my pocketbook as they took her out, and the EMT told me Janey asked her "Is my mama coming with us?"  I can hardly believe she said that, as that is an amazingly direct and clear question for Janey, but the EMT had no reason to not tell the truth.  So the doctors said that probably we had seen the shakes from the high fever.  They told us if Janey ever appears to have a seizure again, to film it.  I must admit I wouldn't have thought of that, and kind of laughed to myself as I had written recently about not taking Janey's picture during bad times.  I'd see a possible seizure as about the worst time ever for picture taking, but obviously it would be for a medical reason!

So we were discharged, with the theory that Janey has some kind of virus.  She is still extremely, extremely sleepy, but the fever is gone.

I have to admit I still feel, at the back of my mind, that her shakes were not just regular shakes.  They were different.  But I was very clear with the doctors about what I saw and that I felt they were not fever shakes, and the doctors listened respectfully and were very confident she had not had a seizure.  I am not a doctor, and I respect their opinion.  But I am a mother, and I do still feel I have some questions.  However, even if she did have a seizure, having a seizure from a high fever is not unheard of, and I don't want her subjected to any major workup unless it happens again.

So...here we are.  I'm waiting for Janey to wake up and be more lively.  I hope she does soon.  I'm tired out of my mind, but overall, pleased with the care she got.  You could tell the doctors and staff at Mass General had training in autism.  It made a noticeable difference as compared to our last ER visit.

Thanks to all of you who made it this far for listening, and as always, for your support!

Janey with a cold

For most kids, getting a cold wouldn't be too remarkable an event.  But Janey almost never gets sick.  She honestly has gone years without a sick day from school, years without a fever, years without a cold.  It's quite remarkable.

Yesterday, however, she woke up obviously sick.  She was coughing a huge cough, and  her nose was running.  And she wasn't happy, not at all.  I thought about what my mother has said---if you didn't know what a cold was, you'd think it was something very serious based on how it makes you feel.  And Janey had next to no frame of reference for her cold.  I can imagine how scary it felt for her.

She spent much of yesterday in fury and tears.  After about a month of fantastic behavior, it was hard to see.  When she is good, she is SO good that it's almost hard to imagine how bad it can get, although you would think we'd have better memories than that.  She came to my bed first thing in the morning and immediately bit me, which she hasn't done in quite a while.  I had to pull her off me.  She didn't bite again, but there was a very lot of screaming and hitting and fury, and some of Janey's unique brand of angry mischief.  She took a two liter bottle of soda and poured it in my dishwater, she threw ice cream at the television, things like that.  It was  a long day, but I kept reminding myself how she must have been feeling.

This morning, despite her cold, which was about the same, we decided to take her with us when Tony drove me to the doctors for a physical.  That was a good decision.  It seemed to reset her mood.  She was all smiles, and although she's been acting out a bit more today than on her very best days, overall, she is far happier than yesterday.

This cold has led me to think about a few theories I have about Janey's autism.  I truly think that something autoimmune is at least a very big contributor in Janey's particular case to her autism.  Our family is auto-immune central.  Just about every one of us on both sides has something going on that is an auto-immune issue.  I think maybe Janey has some small illness around the age of 2 and a half, and her body hugely over-reacted.  I can't remember the illness, but it wouldn't have had to be anything big.  It was the reaction that was big, way too big.  I think that same overactive immune system keeps her from getting sick, even when she's exposed to all the illnesses other kids in her classes have, or when she was at the hospitals she was at.

And I actually think this cold might be a good sign.  Maybe Janey's body is letting down its guard a little.  Maybe it's no coincidence she finally got sick now, after such a great stretch of behavior.

Of course, I'm not a doctor, or a scientist, or a researcher.  I am sure there might be all kinds of flaws in this theory, and I might be totally off, but it's a theory that to me, anyway, makes sense.

In terms of how we react to Janey, I've been thinking about how calmer behavior on her part leads to calmer behavior on our part.  If Janey had been in one of her very tough moods for a month leading up to this cold, we would have been much more discouraged by her behavior yesterday.  But at least for a day, we did pretty well handling it, I think.  We stuck to what we know works with her---keeping her active (which would have been hard if the illness was more severe than a cold), keeping our speech tones calm, keeping her well fed, telling her verbally what we planned to do and where we were going even if we were only leaving the room for a minute (that's especially important with Daddy!)

I hope Janey's cold is a quick one, and she goes back to her healthy ways, but I wouldn't mind a little illness here and there if it means her body is relaxing a bit, physically and mentally.

Janey being the bright spot

The last four days or so have been tough in a lot of ways.  Some weird thing is going on with the power in our section of the city, resulting in the last 3 nights out of 4 being completely without power, in the midst of a very hot spell.  It felt extra hot for me, as I was quite sick, with a high fever over the weekend and a throat that was bad enough so when I finally went to the doctor yesterday, her first words on looking at it were "Yikes!  Wow!"  In the midst of all this, somehow our washing machine stopped draining, resulting in a buildup of laundry to the sky, with no end in sight.  Yesterday, after a day when the power was on and off, and kept browning out, and finally went off once again, and then back on, and then they called to say it would be off all night, tiredness from sickness and sleepless nights caught up with me and I got into a weepy spell, just unable to snap out of it, despite firmly telling myself that all these were minor, first world type problems.

But what was the sunshine through all this?  My sweet Janey!  I can't think of four days of sweeter, easier behavior from her!  She has been, without a single qualification, a delight.  A smile has barely left her face, she's been saying cute things and showing a lot of understanding, she's gone along happily with anyplace we needed to go or anything we needed to do, she slept all night in the hot without a problem---she's been a joy.

Of course, with my overthinking mind, I'm trying to make a connection or a conclusion here.  One thought is that for years now, Janey and her issues have been our focus.  It makes me think to have a spell where other things were higher on my mind.  And I wonder if that has actually helped her some.  Not that we have been ignoring her---we can't.  But we haven't had the laser focus on her I think we often do.  This has coincided with her, for the first time, showing a little interest in being alone now and then.  She can't be totally alone, of course, but if we can see her and check on her every minute, she can be in the next room.  Lately she is often going into William's room when he isn't there and playing with the electronic keyboard he has set up, or sometimes just lying down on his bed and resting.  It feels like she is wanting that down time, away from us all.  Although I think a lot of people have the image of autistic kids wanting to be alone a lot, that has not been Janey.  She's an extrovert, like her brothers and father, and she likes to be around us, whether happy or sad, or she has up to this point.  It's made me happy to see a little of myself in her, as I am the queen of liking to be alone.  Maybe she is starting to need some space, mental and physical.

Things feel better today. I feel better, and the power is back on, hopefully to stay.  And hopefully, Janey will stay happy.  For one of the first times, I feel like she helped me get through some bad days, just by being her sweet self.  Thank you, Janey!

What Made Janey Autistic...#1 in a series

Whenever I run down lists of possible causes of autism, I find no shortage of reasons Janey might be autistic.  Usually, I'm left wondering how she got away with only one case of autism---you'd think she'd have some special kind of double case.  Today, I read this article, about how having the flu and a fever during pregnancy can raise the autism risk, and it brought back one horrible night very vividly for me.  If this was THE cause, it would be a dramatic, specific cause.  So I'll call this #1 in a series, and try to write about some of the other possible causes in the next few days.

That night.  It was about 5pm, and I was tired.  Not regular tired, but a tired beyond anything I'd ever felt in my life.  I was 12 weeks pregnant with Janey.  It had been a very tough start to the pregnancy.  My blood pressure shot up as soon as I got pregnant, from its normally low levels.  It was very obvious this was going to be a pregnancy like my first one, with William, and not like my second one, with Freddy.  The decision was made to put me on blood pressure medication at an appointment at about 10 and a half weeks.  My regular doctor wasn't there.  The doctor who filled in was someone I think introduced herself as some sort of student, or intern.  I wish I remember for sure.  She wasn't a regular in the office.  She prescribed Aldomet, and said "It's extremely safe for pregnancy".  I took her at her word.

After taking the Aldomet for about a week, I got tired.  Not regular tired, but a bone tired.  My face was pale, not a little pale, but people gasped when they saw it pale.  I figured---I was pregnant.  Being pregnant makes you tired.  I remember driving home that fateful night from picking up the boys at school.  I realized I was fighting off sleep, after sleeping much of the day.  When Tony got home, I lay down on my bed.  Suddenly, I realized I felt very, very sick.  It felt like I had felt that way for days, but somehow my mind had not registered that fact.  I decided I should take my temperature.  I couldn't find the thermometer.  I searched and searched, and was about to give up when I did find it.  My temp was 103.  I knew that wasn't good, even in my dazed state.  I called the doctor, and I am not sure if I even made sense.  I said I was coming in, to the evening clinic.  I think they started to ask questions, but I just repeated I was coming in, and hung up.  I called for Tony.  As he was walking over, I think I fainted.  I fell onto the bed, anyway.  He managed to get me in the car, and we went to the office.  By that point I was shaking violently.  When they took my temperature there, I remember the nurse held the thermometer up for me to look at.  It was up to 104.  They called a doctor quickly into the room.

The visit from there is a little hazy.  I know they gave me an IV right away, because I was extremely dehydrated, so much so it was very hard to get the IV started.  I know they took blood.  And I know after a bit, the doctor came back and said I was having a rare reaction to the Aldomet.  My blood tests showed my white blood cells were dangerously low.  My liver function was dangerously compromised.  I was very, very sick.

They sent me to the hospital.  Again, the time there is hazy in my mind.  I know the doctor there said she had never heard of Aldomet causing that kind of reaction.  She researched, and there it was.  It even has a name----Aldomet Fever.  They took all kind of blood, including a kind of special test where they had to scrub my arm for a long time and took what looked like a soda bottle full of blood.  And, at some point, they did an ultrasound.  There was the heartbeat, beating away.

It took me a long time to get better.  And twice more, doctors said things like "I don't think this was caused by the Aldomet"  I printed out a sheet from a Merck Manual online, listing the three things that constitute the type of rare reaction I had---high fever, low white blood cells and liver disfunction.  One of the doctors, I still remember, looked shocked and grabbed the sheet from me.

Much, much later, just a year or so ago, I learned that my aunt also had a terrible reaction to Aldomet.  I hadn't know this.  I also endured a similar reaction when given a sulfa drug a few years ago.  My records show I'm allergic to Aldomet, but no-one made the connection that people who are allergic to Aldomet often also have a sulfa drug allergy.

I remember asking my OB, after my fever had gone down, how this all would affect the baby.  She said that a sickness so severe at 12 weeks usually would have caused a miscarriage.  If it didn't, she said, the baby would probably be fine.  And I know, based on what was known at that time, she believed that.

So---did the Aldomet-provoked sickness cause Janey's autism?  I don't know.  The fever might have, based on recent research.  What it did do, though, was cause me to never again completely trust medication, or, for that matter, doctor's knowledge of medication.  I am very, very grateful that first doctor caught the Aldomet connection.  She was young, and I think she took the time to look up the possible Aldomet reactions.  The older doctors that later questioned the reaction were probably doctors that had prescribed Aldomet for many years, and hadn't seen a reaction.  That's why they call it rare.  But it happens.

I think about that night a lot.  I think I was dying.  I think if I had kept taking the medication, I would have died.  I know that sounds dramatic, but I think it's true.  And a reaction that serious---it's very possible that would have affected Janey, especially at 12 weeks, which always comes up in what I read as a crucial time in development.  But who knows?  As I've said, there are no shortage of other possibilities. If I believed in fate, I'd say that fate wanted Janey to be autistic, and took no chances in making sure she was.

Easy ways to avoid having a child with autism

So you are thinking of having a child, and would like to have one free of autism? Well, you've come to the right place! I've got your easy plan right here! Just follow these instructions and you might well become the lucky parent of the latest autism-free model child!

First of all, you need to make sure you are creating this child with the right person. Take a good hard look at both your pedigrees. Is there anyone with autistic-like tendencies there? Any secret Thomas-the-Tank-Engine lovers? Genetics is one of the possible causes, you know. Assuming that every last one of your ancestors are free from any suspicion of secretly autistic traits, then take a look at the age of the male of your couple. It's a rare case where the woman seems off the hook, but if the male is an older father, it's thought that almost all the new weird genetic mutations that might lead to autism come from his side of the contribution. So you might want to trade him in for a younger model. The other factor you want to check both sides for is the presence of autoimmune disorders, which might play a role in autism. Any diabetes, asthma, arthritis, thyroid disease, lupus, MS, stuff like that? No? All set there? You are ready to get pregnant!

Now there are just a few rules you must follow when pregnant. First of all, don't get sick. Fever during pregnancy is thought to be a culprit. It might be good to isolate yourself all during pregnancy to avoid that. Next, look long and hard at medication you might take. Ask your doctor. Your doctor might say whatever you are taking is just hunky-dory, and then a few years later it's discovered that it isn't. But doctor's orders! So if you take any medication at all, you might want to go back a step and not get pregnant to start with. Avoid being overweight. Avoid getting pre-eclampsia. Avoid being stressed. Avoid getting pregnancy-induced diabetes, or any thyroid problems. Just to be safe, have a picture-perfect pregnancy in all ways.

Now---during the birth. Don't have any birth trauma or lack of oxygen. Don't have your baby prematurely. Hold them right away and let them know how welcome they are. Most people don't believe autism is caused by "refrigerator mothers" subconsciously rejecting their babies anymore, but you know how those things swing back and forth, so avoid ever thinking a single negative thought about the baby.

Now it gets tricky. There's the vaccine question. Science doesn't seem to back up that vaccines or mercury in vaccines cause a problem, but many mothers and blogs and celebrities think it does, so you'll have to decide on that. Make sure the baby doesn't get any infections soon after birth, viral or otherwise. Some people think lately autism is caused by an over-clean environment not teaching the body some early immune responses, so be reasonably casual about germs, but of course, that's subject to change at any point, and if it's later decided dirt causes autism, you'll never forgive yourself. Lack of vitamin D is one theory, so live in a sunny climate. Too much rain could be a problem, so if you get hit with some long rainy spells, move. There's the whole possible diet connection, with lactose and gluten being suspected as problems. Who knows, but why not just never serve any of them to be sure? Early TV could be a problem, so get rid of your set.

And of course, if your child STILL is stubborn enough to show even the slightest autistic trait, you want to nip it in the bud. Have your child screened for autism starting at birth, probably every week will be enough. If you see the slightest sign of it, start ABA about 100 hours a week immediately, until your kid is so normal they could be a model for normalness.

And you know of course this is all very tongue in cheek. I've just been reflecting a lot lately on how the almost daily new ideas about what causes autism must put through the heads of someone determined to do all they can to give their kids a good head start, a nice autism-free life. And the moral is, of course, you can't do that. You could do everything possible known right now, which would result in some crazy doings, and in a few years, it could be determined that everything you thought right was wrong. We just don't know what causes autism. There probably isn't any one thing that causes it. So do what you feel is best. Do what you yourself decide is healthy and reasonable to do. Listen to a good mainstream OB/GYN or pediatrician. Use your own judgement. Don't listen to what bloggers say, including me.

And if, all else failing, you do end up with an autistic child, I'm here to say it's not the end of the world. You aren't a terrible person for somehow not being able to prevent that happening. You are a parent that like many parents from the beginning of time, were dealt a tough hand, but you will deal with it. Your child may not take you to Holland, but they will give you moments of extreme joy along with the hard times. Congratulations on your child, autistic or not.

Okay, another check on the checklist

The latest news from the world of autism? Fever during pregnancy can double the risk of autism. Here's an article. Lovely. Another way I caused Janey's autism. It's like I went into the future, found a list of all the ways they were going to decide autism could be caused, made up a checklist and tried to hit them all. If there was something called double autism, she'd probably have that, I hit so many of those checkmarks.

The fever I had, at 12 weeks, was pretty severe. It was caused by my reaction to Aldomet, which I was put on due to getting preeclampsia (high blood pressure and other problems) early in my pregnancy. Of course, preeclampsia is another risk factor recently discovered for autism. Of course.

I can't wish they wouldn't discover all this stuff. I want to help other mothers-to-be. And I know that I certainly didn't MEAN to put Janey at risk for autism. I would have done ANYTHING during my pregnancy to avoid it, if I had known. But I didn't. Nor did Tony, who was an older father, one of the rare instances where fathers can join in the guilt parade. I didn't know another medication I was taking, which I repeatedly asked my OB if I should stop taking, would later to said to be another possible cause.

I know it doesn't do a bit of good for me, or for Janey, to get upset over all this. I don't have a time machine. I can't change anything. And I should feel happy for others, who might not have a child with autism due to all the recent discoveries. But of course, I feel guilty. That's what mothers do.