Thursday, June 4, 2015

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.

1 comment:

Vijaya said...

Hi Suzanne,

Please keep reminding ' IT WILL GET BETTER'

we are in complete awe of janey ' s strength and how hard you all are working for janey .I have a Autistic son who is completely non verbal. It breaks my heart to know they cannot communicate the basic things even with thousands of hours of therapy .
It sent me shivers to read Janey had to live three days after the appendix burst. It's so unfair our children have to go thru this.
we are praying and thinking of Janey.

Please remember you are not alone and fell lucky she is getting the best care.