How is Janey doing?

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

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

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

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

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

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

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

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

Drink, Janey, Drink! Part 10

I most sincerely  hope part 10 is the last part of this saga written in the hospital.  Janey is ready to go home except for one thing---her drinking.  Talking with her surgeon on Friday night, she explained her eating, although not good, is not nearly as crucial as making sure she drinks enough.  You can go a long, long time without eating---Janey went about 10 days without anything but IV fluids---but you can't go long at all without drinking.  And Janey is drinking very little.  She did  better today.  She had about 20 sips of water, and quite a few times, she let Tony fill a straw with lemonade and then put it in her mouth.  All together, her fluid input by mouth was maybe 4 to 6 ounces, and that was with extreme effort.  That isn't enough.

Part of why Janey isn't drinking is the thrush in her mouth.  All the bacteria pretty much in her digestive system was killed by 2 weeks of three strong antibiotics.  So yeast was able to take over.  She has a terrible diaper yeast diaper rash and the thrush is also yeast.  It probably hurts her to drink, although she does seem able to eat things that aren't super easy to eat, like salami and onions.  Part of it might just be that she is sick of us trying to force liquids on her, and she is sick of the whole hospital routine.  I think if she were home, she'd drink more, but Tony isn't as sure, and I trust his judgement.  He's the best at getting her to eat and drink.

There was talk today about putting her on something to stimulate her appetite, but we have learned that not much seems to happen  in hospitals on the weekends.  Despite that, I am hoping tomorrow might be the day we go home, but it would more likely be Monday.

How do I feel about going home?  Mixed feelings.   I am scared, partly.  I'm scared because I now see how very much I don't know about Janey's health, and how quickly and scarily things can go downhill.  How will I know how serious things are, if a top-notch hospital first saw her very early Wednesday morning and didn't finally realize she had a burst appendix until Friday afternoon?  They know a lot more than I do, and they didn't see what was happening until things became hugely serious, leading to a recovery fraught with complications.  That is Janey.  She is hard to read, I know, and I am realizing it goes further than I ever even knew.

I am scared also because Janey is still tough in the ways she was before this all happened.  She has been, ironically, easier in a behavioral way during the whole ordeal than she has in years, but of course not for good reasons.  She has been in pain, on morphine a lot, out of it.  Now, as she starts to come back into herself, we are again seeing some self-biting, a little aggression.   And we have no more help, no more solutions, than we ever did.  In fact, we are more sure than ever there really isn't any help out there.  I talked to two separate hospital social workers and the hospital OT who is the autism specialist, and neither of them knew of a single source of respite or a single program that would help Janey.  I am satisfied, if that is the word, that none exist.  Except school, and school for Janey is over until maybe summer school.  There are two weeks left of school in Boston, but Janey will be home.  She is still too sick for school.

The good feelings about going home are, well, that I will get part of my life back.  I got into gardening in a big way this year.  The garden has been left almost all to its own accords for weeks now.  I hope I can salvage some of it.  Janey may be easier to entertain at home, or not.  I will be able to spend more time with my boys, and see the cats, and just not be in a hospital all the time.

In many ways, I feel like I haven't really even fully processed what has happened.  It feels unreal in a lot of ways.  Of all the things I worried about with Janey, the idea of her becoming seriously sick was right up with the last of them.  Life likes to do that to people, and sometimes when I am feeling sorry for myself, which has happened a bit more lately, it feels like it likes to do it to me in particular.  I don't like that feeling.  I don't like feeling sorry for myself.  I am working to get that out of my head.  But it sneaks back now and then.  Maybe I should just take a while to feel it, and then move on, because that is all I can do.  It's all all of us can do.