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.