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Friday, June 5, 2015

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.


Kimberly Theriault said...

I think that is a great idea! You have helped so many people learn about autism through this blog and I think you could definitely harness that ability to you and use it to help doctors understand a bit more about what autism looks like, and how a child with autism and a serious illness may not be symptomatic in the typical ways.. let's face it, our children are never typical in anything they do, why would they have the same, typical symptoms other children have when it comes to illness?

What you are doing right now by documenting this ordeal, is more helpful than you know. Especially to other parent's of autistic children, like me, who have often wonder "what will I do if Mia gets sick?" / "How will I know if Mia gets sick?".. You're insight is critical. I feel more comfortable with the knowledge you have given me and others. Thank you for having the tenacity to continue with this endeavor amongst such personal turmoil.

And, as always, positive, get well soon, vibes to Ms. Janey!!

Angela Gibbs said...

It can be hard to get them to eat, especially if the pain flares up when they do. In time, they associate the pain to eating, and the reluctance grows. At that point, it’s really best to just let the wounds heal first, and then coax them to eat something then. Meanwhile, try to find something that’s either fluid or very easy to digest, so that she can still eat a bit while recovering. Anyway, I hope she’s doing a lot better now. Take care!

Angela Gibbs @ MedCare Pediatric