Eat, Janey, Eat! Part Nine

That's about the size of it---working all the time to get any food into Janey. We can think about going home once she eats a little more than she is now, but she is very non-interested in food.  Just now, as I started to write, we had a little breakthrough.  Tony got a long thin loaf of fancy bread at the Whole Foods near here, and Janey is holding it and taking mini-bites.  She actually asked for it when we thought she was done and took it away.   It's the first she's really eaten without being seriously urged.  This morning, she ate a slice of onion---one of her favorite foods, and she's  had a few slivers of salami.  But that's about it for today.  That isn't enough.  She is getting some breaks from the round the clock nutrition by IV, to try to get her hungry.  I know she will eat in time, but I wish it would be now, although I know she is regulating herself based on what she feels like she can stand.

Otherwise, she is mostly okay.  Today is the last day of her antibiotics---day 14.  It's hard to believe this is day 15 overall in the hospital.  In today's drive-through hospital stay world, that's a long, long time.  She is walking with a lot more ease.  She does still have diarrhea and quite a rash in that area, but her digestive sounds are good, and two of her three drains have been taken out.

That's the physical part.  As Janey gets feeling a bit better, it's getting harder to keep her happy here.  Part of how we knew how very sick she was is how easy she was to care for, when she was sleeping huge parts of the day, watching TV listlessly and just not fighting anything.  Now, she is getting bored, I think.  Thank goodness for the iPad.  For years, we resisted letting her use the iPad as an alternative TV.  The iPad was the device that was supposed to change autism, to teach Janey to communicate, to learn!  I put all kinds of educational programs on there, "fun" one, but I didn't show her that she could watch YouTube on there too.  Well, of course that is no longer the case.  We put on YouTube Kids, a great program which allows her access to a filtered YouTube, and she is watching it around the clock.  She loves the control, so she can watch as little or as much of a show as she wants.  I've tried to show her how to use the voice search, but she doesn't like to talk on demand in that way.

I have a million thoughts about the hospital experience and autism, especially ones comparing this stay with her stay last November as a boarder waiting for a psychiatric bed.  But I've decided to wait on writing more about that until she is home, because I need a full perspective on the stay, and because right now, my main focus is on getting her better and recording the steps that are leading us to that.

Thank you for reading, for your love and thoughts and prayers and support!  We have needed and will be needing it badly!

Janey's burst appendix story----Part Five

I very much hope this story doesn't get more than a few parts longer.  Yesterday, that was looking more likely.  Today, not so much.

Janey got moved back down to the regular ward yesterday afternoon.  We were very hopeful when that happened.  Her surgeon thought her belly felt much better, and had digestive sounds, and although she had originally planned on getting a CAT scan, she cancelled it.  There was also a lot of talk of getting her a PIC line for nutrition, but with the belly seeming better, it was decided to give her a day to try to start eating, and she was allowed clear fluids.

However, she didn't have much interest in eating (or drinking, really).  She did have some ginger ale and a bit of lemon ice, but mostly she pushed away anything we tried to give her.  She also seemed to be in more pain, although she hasn't had a fever in almost two days now.  She was restless.  The room we are in has two beds, and she was determined to move to the one she wasn't on.  So determined that she knocked out an IV trying to move once and then loosened one another time, sending out blood.  She also is still having diarrhea, lots of it.

So this morning, her surgeon decided to order the CAT scan after all, and she is there now getting it (with Daddy)  She thinks she has an abscess forming, and that would need to get a drain.  They also are going to finally get the PIC line, as Janey is getting thinner and thinner.  She is looking bony.  She hasn't had real food for 11 days now, which is just way too long.

It's hard to believe all this is still going on, but in other ways, it feels like it's been going on for a lifetime.  I feel like I can barely remember life outside this hospital, at times.

Last night, Tony slept here where I slept in the extra bed.  Usually, I have him sleep at home or in another room, because he is a heavy sleeper and I am not, and we want to hear what is going on.  That was the plan yesterday, until I just felt I'd hit some kind of limit.  It wasn't tiredness---I've almost gotten used to that.  It was a feeling that I could not longer make decisions.  I could no longer tell if Janey was having an issue I should call the nurse about, if she were fine or not fine.  I think I'd had so many days of total vigilance that whatever brain system handles that was no longer working.  So Tony took over that, and I went and ate some dinner and sat in the parent room and read.  It helped.

My mind is still too much of a whirl at this point to be sure, but I think I know what I need to do when this is over.  I need to reach out to those in medicine that deal with autism.  I need, in some way, to educate those non-autism specialists what autism looks like, and crucially, how to proceed when dealing with a child that might be critically ill but doesn't show it in typical ways.  I talked yesterday to a woman here who is kind of an autism liason with the hospital, and she mentioned I might want to try to join the parent board of the hospital, as she thinks they don't have a special needs parent.  I am far from a joiner, but that might be something I have to try.

So---we'll be here for a while yet.  Yesterday there was talk of us getting home by Monday, which is Freddy's graduation day.  Today that talk seems to be gone.  Of course, that could change again tomorrow.  I've figured that much out there---it's an hour by hour thing.  You can't really make plans, because Janey's body is the one making the plans.  I hope it's planning for a full recovery in the fairly not so long future.