Tough decisions regarding medication.

Today, we took Janey for her follow-up appointment with the surgeon.  It feel odd to be back at the hospital, to be at a place that had been almost home for 18 days and that we hadn't seen since and might (hopefully) not have to see again for a while.  It was a bit overwhelming.  Janey's appointment was good.  She's not all the way recovered, and her weight is a concern---she's lost about 20 pounds from her baseline when this whole bit started---but she is on her way.  It was nice to see the surgeon, and have her see Janey again.  I felt once again very glad we had chosen Mass General for her care.

The tough part lately has not been Janey's physical health, but some decisions we need to make about her autism, specifically, decisions about her medication.  I haven't written about this on here before now because I've been waiting to see how things were playing out.  Janey has been off any psychiatric medication for over a month now, from the time she had her surgery.  It started because she couldn't have anything by mouth for a while, and the medication wasn't available in IV form.  So we stopped it then because we had to.  However, we weren't eager to start it again at that point.  Janey was still recovering from a hugely major medical crisis, and she didn't have the energy to have any kind of behaviors that would require medication.  So---we decided to wait.

The strange thing was, for the first month anyway, that it made absolutely no difference.  Janey's negative behaviors, once she recovered enough to show her behaviors, was no different on or off the medication.  She still bit her arm, she still got upset easily and was obsessive, but it wasn't worse. And more importantly, her POSITIVE behaviors were better.  She seemed calmer, more connected.  She had a lot of wonderful smiles.  She looked at us in a way we hadn't seen in years.  It is hard to describe, but she just seemed more herself.  Both Tony and I remarked we saw a Janey we hadn't seen since she was 2, a pre-autism Janey.  And so we weren't in any hurry to put her back on medication.

The last few days, though, we aren't so sure.  Yesterday, especially, was a hugely difficult day.  Janey spent most of the day in a fury over one thing or another.  She obsessively asked "Go to Maryellen's house?", my friend Maryellen's house she loves to visit.  However, the day before, we had gone there, and once there, Janey wasn't any happier there, and I am pretty sure she again wouldn't have been if I had actually been able to take her.  It was just an obsession of Janey's.  When she wasn't saying that, she was saying "Snuggle on Mama's bed!", which actually meant on her bed, and "Go under the covers!", which means, don't just sit there half on the bed, but act like we are about to go to sleep, do nothing else but lie there.  Which is fine at bedtime, but lately, since coming home, it's what Janey wants to do about half the day or more.

When we say no to Janey, she immediately, violently, gets mad.  Last night, she asked Tony for bacon, at around 10 pm.  He said no, and she screamed, screamed as loudly as you can imagine, "NO!  NO!  NO NO NO NO NO!!!"

Today, while waiting to see the surgeon, Janey got upset in the waiting room, and started screaming that piercing scream and then smashing her head with her fists, over and over and over.  And I thought---yeah, we are going to have to go back on medication.  But once I had a minute to think, I thought---were things better then?  She was on medication when we had the awful stay at Children's and then the 19 days at Bradley Hospital.  She's been on medication for the last 5 years.  Has it helped?  Sometimes it seems like it has, but it's hard to say.  It's really hard to say.

I think when I started to really question the whole idea of medication was after we saw the Lurie Center, when I started to realize that there was nothing being offered to Janey at all BUT medication, and when they started her on a NEW medication, and we were not given clear instructions on taking her off the old one that was similar.  Or later, when in talking with people at Mass General, we realized Janey was getting a time release version of her other medication, but since we crush the pills and mix them with water, she probably was getting the time release dose all at once.  Both times made me feel like we are playing with fire, that we aren't being instructed clearly enough about these hard core medications, that perhaps we should not be giving them to her because of that.

With a child like Janey, there is not much doctors or psychiatrists can do, I'm realizing.  In today's society, they have no respite, no therapies, no groups, nothing really to offer to a child with severe autism and a fairly severe intellectual disability.  So---they offer medication.  It's what they can do, it's easy to do, and they want to help, they really do want to help.  But does it help?  I don't know.

So we are left with a decision.  Do we put Janey back on medication or not?  Does it help anything?  Are the calmer times that happen off and on while she takes it just change, just times she would be calmer anyway?  Is it worth the potential side effects?  Can we figure out other ways to help her?  Can anyone?  I don't know.  We will see.  It's going to be a tough decision to make.

HOME!

Yes, indeed, after 18 days at Mass General Hospital for Children, Janey is finally home.  It's wonderful to have her here.  I'm not going to write much tonight, but I know in the coming days, weeks, months and probably years, I'll be reflecting on this whole experience.  For now, I mostly just want to write a few thank yous.

Janey, right before heading home!

First, to my family and friends for being so supportive during this whole ordeal.  It was wonderful to have everyone at the other end of a phone line or an internet connection.  I loved the cards and even a few packages sent to me by people I don't know in person but know through this blog and feel very close to!  My local friends were great, and I most certainly could not have gotten through the combination of Freddy's graduation week and the hospital stay without them.  William and Freddy held down the fort at home and visited Janey often, and were their usual terrific selves.

The main entrance to Mass General

Next, to all of the staff of Mass General that worked with Janey.  It so very much shows that the whole hospital has been trained in autism, but beyond that, that the hospital seems to have a special air about it.  We've spent time in other hospital, but there was something about this one---a feeling of caring on a personal level.  Janey's surgeon, Dr. Cassandra Kelleher, took so much time to talk with us and to explain everything, and to show she saw Janey not just as a case but as a child, one she cared about.  The nurses---wow!  So many thanks to Karen, Daisy, Katie, Jenny, Vicky...and all the rest whose names escape me just now but who I will always be grateful to.  I never once, not for a minute, felt like Janey's autism was something they found difficult to deal with.  They listened to what we said would work best with Janey and did everything they could to make every procedure and test as easy on her as possible.  Everyone else at the hospital---the people who brought the meals, the staff in the playroom, the OT who wrote an autism plan for Janey, the CT scan people---everyone was respectful and kind to Janey and to us.

Janey is nervous in the elevator, but Daddy is right there as always

My biggest thank you right now is to Tony, my husband.  I think sometimes I don't mention often enough here what an amazing father and husband he is.  This was one of the toughest times we've ever gone through in our lives, and he was so wonderful.  He put his stressful job totally aside and took the last two weeks to just be with Janey, at her side.  He let me keep my sanity, and his presence helped Janey stay calm.  She loves Daddy like no-one else on Earth.  It's not an easy gig, being Janey's father, but he excels at it.

So---now on to recovery at home.  With everyone's help, I think we will make it.