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Tuesday, November 18, 2014

The hospital story continues

I'm waiting tonight for Janey to wake up from sedation after an MRI (which was totally normal), so I thought I'd try to write a bit more of Janey's continuing hospital story.

Monday morning, after a fairly sleepless night,  Tony went into work to try to get in a few hours.  Janey was restless, but not lashing out.  We had a lot of calls and visits.  The medical doctor assigned to her came in and talked tome.  She said any hospital Janey was sent to would require a medical workup before taking her, so they figured they should do  one while she was here---blood tests, an MRI, an EKG and so on. That sounded good to me.  After that, both her regular psychiatrist and her pediatrician called.  Both didn't have too many ideas, and were surprised by the turn of event, but both said basically the same thing, that they knew I was always reluctant to get help or to admit things were as tough as they were, and that they were glad we were going to get help, even if I had to sort of be dragged into it.  I was kind of surprised they both saw that about me.

My dear friends Maryellen and Fab both visited that day.  Maryellen stayed almost all day, which was a huge help.  Fab could only stay a little bit, but she brought us some bread, cheese, chips and a big sour pickle for Janey!  Later in the day, Janey's classroom teacher also came to visit.  She brought Janey a big bag of books and other things from the classroom that Janey especially likes.  We had gotten a visit the day before from a teacher Janey had in the past and really loved too, and for both teachers, Janey had a huge, huge smile and hug.  It is so good to see how much she loves her teachers and they love her.

When Tony got back from work (he worked part of a day), we both talked in a private room with the psychiatric social worker assigned to Janey.  We went over her history, and how her behaviors had so wildly escalated the last week, without a real trigger we could find.  She told us more about the psych hospital procedure---that this hospital calls 3 times a day to look for available beds, and the hospitals either say yes or no, or that they want more information to see if the child would be a good fit for their ward right then.  One of the two hospitals that could potentially handle Janey had asked for her information, but had no room right now.  We asked her about a few things that had been bothering us, like the "sitters" in the room (required, nothing she could do) and how Janey couldn't leave the room (she had to talk to the psychiatrist to see what could be done)

Then----I went home.  I got a ride home with Maryellen, and got home about 4.  It felt hugely weird to be home.  It felt like I had been gone years, not just days.  I was bone tired, but not quite ready to sleep.  I did have to do some laundry, as we were running out, and Freddy and I watched a little Star Trek Voyager and had some pizza.  I did some computer time.  By 8, I was so tired I wasn't even able to really function.  Tony called, and I tried to call him back, but found I could barely remember how to use a phone---truthfully.  But I felt wired, like I couldn't sleep.  I wound up taking some melatonin, some we had gotten for Janey which never worked for her.  It worked for me---I fell asleep and slept until 5 am, when Freddy woke me up to take the train back into the city.

Tony had a fairly good night with Janey.  She slept from 7 until 3 am, which is not even that early a wake time for her.  He talked to the psychiatrist, who he liked, and he fended off a doctor who wanted to wake Janey after she had been asleep 5 minutes to check her throat.

I got back to the room about 6:45.  The plan had been for Janey to have an MRI at 7, but we had heard nothing.  When we finally did, it was that the MRI had been delayed until noon.  That was tough, as Janey hadn't eaten since midnight and hadn't drunk since 4 am.  She spent the morning begging for food and drink.  It was a long morning, but she remained pretty calm.  The contrast to the events of the weekend was incredible.  As it so often does with Janey, her mood had simply changed.

Janey finally had the MRI about 2.  It took a while to get it started, because they were very careful (and good) about how they gave her the anesthesia, I'm sure after reading her records and knowing how she could behave.  They gave her oral sedation, which took extra long to take effect, and then an IV.  We went back to the room while she was under.  It felt very odd being in the room without Janey.  Finally, they brought her back around 6, but she still hasn't woken, as of 8:45.  They aren't concerned, as she is on a monitor and she had so much sedation.  I am only concerned how she will react when she wakes up.

So---I am caught up to the present!  Although the present is still filled with much uncertainly.  When talking to the social worker tonight, we found there is still no progress on the placement.  There was a mention that as Janey is getting better, she might be able to go home instead of the other hospital.  As much as I want her home,  I don't like that idea.  We haven't figured out what made her lose control so badly, we haven't done anything to prevent it from happening again, and I feel quite sure that it WILL happen again, without help.  I don't want this whole ordeal to result in nothing.  I am glad Janey is calmer, but that is what Janey does---she cycles.  Although we all always hope her cycles stay good forever, all who know her know that is most unlikely.  And I don't ever, ever, ever want to come back here as we did on Friday.  So---we will see what the next few days hold.


Unknown said...

Good to hear she's feeling better. Hopefully they find an opening soon for her.

Angel The Alien said...

If she seems to be doing well sooner, will she still have to stay in the hospital and eventually move to the pediatric psych ward? Or will she be allowed to go sooner? It sounds like a really hard situation, because on one hand it sucks to be stuck and for Janey not to be allowed to leave the room for an indefinite amount of time... but on the other hand, if you don't know exactly what is going on with her, it is probably better to be there.

Unknown said...

I have been reading your blog for over a year and never commented, but I wanted to let you know that I am thinking of you and of Janey. I really hope that this leads to your family getting the support that you need.

Antti said...

I have it difficult to swallow that you would have been reluctant to admit how difficult things can be for you.