Thursday, January 8, 2015

A Cold Day in Hell

Last night, when the word came that Boston was calling off school for today due to very cold temperatures, I immediately braced myself.  A day off in the middle of the week, for whatever reason, seems like the thing that sets Janey off more than any other.  You might recall how Veteran's Day set off a recent chain of events---yeah.  So I was not happy.  I know all the arguments for calling off the day, I know it was probably the right thing to do, I certainly don't want any children getting frostbitten waiting for buses---none of that.  But thinking strictly of Janey, I was not happy.

The day was hellish.  I have to say---you know how sometimes you think a day is going to be bad but it turns out okay?  That wasn't today.  Janey spent huge parts of the day screaming, just plain screaming her lungs out.  There were a few hours in the middle of the day with slightly less screaming, and the boys helped all they could---thank goodness they were home---but mostly, it was pure hell.  Before the boys were awake, by 10 am, Janey had hit me many times, bitten me a few times, bitten her arm over and over, screamed for a couple hours and generally worn out all my reserves for the day.

Lest it seem like I didn't try to distract her, I'll say that before 10 I also had read her about 15 books.  She has lost interest in TV or videos lately, but I tried, with putting on "Annie" and sitting with her and watching it, to find something she'd enjoy.  I had made her another breakfast, after Tony made her one before he left.  I had played toys with her, I had sung with her, I had looked at birds with her, I'd done everything I could think of to do except go outside, which seemed ill-advised to do when the temp was 2 below and there was a strong wind.   The longest any of this kept her happy was about 5 minutes in a row.

Tony got out of work a bit early, and we had hopes she'd feel better when he got home, but she didn't.  She has been screaming now for an hour.  I am writing to keep myself sane.

We are at a loss lately.  The new medication doesn't seem to be doing a thing.  In fact, she seems less happy than ever.  It is especially supposed to treat mania, and maybe mania was all that made her happy.  She is not enjoying life.  The aggression is as bad as ever.  The screaming is worse than usual.  And we feel out of options.

I got the bill for the stay at Bradley Hospital.  Our insurance covered it pretty well, unlike the Children's Hospital stay, but if we had had to pay out of pocket, it would have cost more than $80,000.  For what?  I noticed on the bill that only about $200 of that was for psychiatric care.  From what I know of costs for that, that is less than an hour.  The rest was almost all for housing.  I know there were nurses there, I know the milieu therapists were trained and worked well with kids, but the stay was not something that helped long term.  It certainly held her in a time of crisis, but knowing now exactly what is out there for help in a time of crisis---well, there isn't much.  And to get what there is requires the horrific "boarding" at the regular hospital first.

Hopefully, tomorrow will be a school day.  And hopefully, the fact it's just one day and then weekend won't cause too many problems.  Hopefully, we will all regroup and keep on trying to do what we can to help Janey.  Hopefully, someday, somehow, she will be happier.

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