One year ago today

A year ago today, Janey had emergency surgery to remove her burst appendix.  The surgery was preceded by days of extreme sickness (the surgeon estimated it had been burst for 3 days before it was removed) and was followed by weeks of complications----a stay of three days in intensive care for breathing problems, another surgery to place tubes due to abscesses, being fed by TPN into her bloodstream for quite a while, much weight loss---it's hard to believe it all happened, looking back.

In a lot of ways, the health crisis changed how we look at life with Janey. To put it in a slangy way, we don't sweat the small stuff as much.  We focus more on making Janey's life happy and calm.  I think it's safe to say we decided to change our behaviors instead of trying to get her to change hers.  We did this at first because for several months, she was still very affected by the hospital stay.  She was, as the surgeon told us she would be, debilitated.  It was important to focus on very basic things, like making sure she ate and drank.  

To our surprise, life with Janey got easier, overall, when we tried less to change her and more to change ourselves.  That's not why we did it, but we realized that if she's happy, everyone is happy.  If we keep her calm, we all can live our lives a bit more.  

Of course, there's no miracle change.  There are still days when Janey screams a very, lot, cries constantly, gets frantic for reasons we don't understand.  But there are less of them, and they feel less desperate.  They don't seem to last as long or usually be as intense.

In the hospital, Janey watched "The Spongebob Squarepants Movie" about 50 times.  Since then, she's watched it maybe 100 more times.  That's a good example of a change we've made.  I used to always try to get her to watch new things, or, heaven forbid, not watch anything when watching TV was what she wanted.  Now, we let her watch what she wants, when she wants.  She doesn't watch more TV, I wouldn't say, but we relax and let her enjoy it, and enjoy the time it gives us.  Believe me, that was a breakthrough for me.  I always pictured myself with kids that shunned TV and instead played with wooden organic toys and begged me to let them get one more library book.  But that was me---my dream, my vision of parenthood.  

Janey sleeps every night with a pillow covered with a flannel pillowcase she got in the hospital.  I looked up just now to see the name of the charity that makes pillowcases for children's hospitals---it's Ryan's Case for Smiles.  Janey has never been attached to any object like she is to that pillowcase.  She looks for it the minute she comes in the house.  That's just one example of all the kindnesses we were shown at Mass General Hospital.  If you have to have a child spend almost a month in the hospital, that is the place to be.

I feel like this post is disjointed, and that is partly because my mind keeps drifting back to a year ago.  Of all the things I ever worried about with Janey, a severe physical health crisis was about the last.  I wish it all hadn't happened, of course, but it did, and the perspective it gave me has changed me.  Our kids, all our kids, are precious.  It sounds like a sappy card, but I realize you can't take a single day for granted.  Janey, I am so glad you are with us today.

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.

Janey's Burst Appendix Story---Part 3

If I could make wishes come true, this part of the story would be featuring us getting ready to go home, Janey almost all better.  But I can't make wishes come true, so I'll have to tell the story as it is happening.

Yesterday morning, Janey's oxygen was still a big issue.  The plan was to get her up and walking around more, to try to get the fluid that had built up in her lungs down.  She had gained 13 pounds of water weight in 5 days, without eating literally anything at all.  So the swelling was pushing on her lungs, as a chest x-ray showed.  We tried a walk around the floor, followed by Janey sitting up in a chair.  She got very, very tired from this, and when she got in bed, she went into a sleep that was very hard to wake her from.  If the oxygen mask left her face even for a minute, her oxygen went down, sometimes as low as 77, which is very low indeed. 

One of the doctors on her surgical team came to see her, and it was decided it was time to take her to the the PICU, the Pediatric Intensive Care Unit.  It was too hard to wake her and her breathing was too compromised to stay in the regular unit.  So around 2 pm, we were moved to the PICU. 

To work on getting Janey's fluid down, she was given a diuretic drug.  This worked pretty well.  Her swelling went down quite a lot, and gradually, as the evening and night went on, she was requiring less oxygen and was breathing better.  By morning, she was on room air.  Her oxygen levels now are around 93 or so, without oxygen---not perfect, but okay.

I got to listen in on her rounds this morning, where her case was discussed.  At that point, people were feeling better about things, and it was decided that if she stayed stable, possibly she would be able to go back to the regular floor this afternoon. 

Janey hasn't eaten really anything since last Monday, 8 days.  She's had IV fluids, but no food and most of the time, not even any water in her mouth.  The doctors said today she could have water, and clear liquids.  We offered her a choice, and she decided on a juice box.  She drank literally one tiny sip of it and threw up.  An hour later, she threw up again, far more than she had drunk.

By chance, the surgeon that had done her surgery was walking in the door as Janey threw up.  That started a discussion.  Janey's fever has never gone totally down for more than a few hours.  Today, it is higher than yesterday.  So, since she has shown her gut is still not working at all, the surgeon, Dr. Kelleher, said she might have an abscess in her digestive trait, as she had warned us could happen. 

So---tomorrow she will have an ultrasound to see if there's an abscess.  If there is, she will have a drain put in to work on clearing it.  That will not be fun.

Either way, it's probable that tomorrow she will have a special IV put in to allow her to get nutrition in an IV.  I think this is called TPN.  Her water drinking privileges are over for now.  She will stay in the ICU for at least another night.

Those are the facts.  My feelings---well, I will hold off on getting  into a lot of those.  It's all too raw right now.  I'll just say that just after she came to the ICU yesterday, I went to get something to eat while Tony was with Janey.  Somehow, my mind was such that I went outside and got lost.  I walked around the huge hospital complex aimlessly, unsure how to find anything, and pretty much not caring.  It was raining hard and I was numb to that and everything else.  When I finally ran across the front entrance, pretty much by change, and found my way to the cafeteria, I felt like I had forgotten how to do the most basic things in life.  There were lines to get hot food, but it seemed far too complicated to do that.  I grabbed the first sandwich and soda that hit my hands, and sat down to eat them.  I was mostly done with the sandwich when I realized it had olives in it.  I hate olives with a passion.  Then I looked at my soda.  It was Sprite Zero.   I hate diet soda.  All this to say---I was completely, totally, absolutely out of my head overwhelmed.

I calmed down after that, and today I am feeling back like myself, in reality.  Not to say it feels like any reality I expected to happen.  I would not have been surprised at many things that could have happened with Janey, but this?  She has barely been sick a day in her life. 

I was thinking how it would feel in the pre-internet world to be here.  As scary as this all is, I don't feel alone.  When I was awake in the middle of the night last night and wrote a post on Facebook, people saw it and commented within minutes.  That's an example of the miracle of having friends all over the world, people I have never met in person but that I have met with my heart.  Thank you, friends.