Scoliosis Appointment

Today was Janey's scoliosis appointment, the second in what will be a series of appointments to see to what extent her scoliosis is worsening or getting better.  It was a tough appointment, and it made me think a lot about how hard it is to truly access effective medical care for our kids.

The appointment was at eight in the morning, so the first issue was that Janey didn't go to school on the bus.  That's a change of routine, but she was actually excited about it.  She hopefully asks almost every morning if we can go for a car ride, and today, she must have thought we'd finally come to our senses and forgotten the school nonsense and just decided to take her driving.  She was cheery right up until we got called in for her x-ray.

At first, the technicians tried to give Janey a very high tech x-ray, in a booth where she'd have to stand still for thirty seconds with her hands up high while her back was scanned.  They asked me if I thought she'd do it, and I said it was a possibility.  Janey sometimes surprises us greatly with her cooperation at such things.  The last time she had an x-ray, when she was in the ER with pneumonia, she was great.  But this time---no.  The booth freaked her out.  She started screaming.  They quickly decided to switch to a more conventional x-ray, but that involved waiting for another room to be set up.  Janey and I had to wait on some chairs for a little bit.  Everyone was quick and friendly, but Janey was not happy.  She screamed at the top of her lungs and bit her arm and tried to bite me.

Thankfully, we quickly were in the other x-ray room.  Here, Janey calmed down a lot.  I put on  a lead vest and was able to hold her hand as she stood against the wall for that x-ray, and she was totally still, so they could get a good read.  I was very proud of her.

Another quick wait in the waiting room led to more screaming.  The room was full by that point of girls about Janey's age, there I am sure also for scoliosis checks too.  With Janey's screaming, I didn't have time to look at them  much, which is in some ways good.  It can be hard to see kids her age reading, having involved discussions and basically doing a lot of things Janey doesn't do and probably will never do.

Then, on the exam room.  Janey was highly agitated by then.  She wet herself, through her pull-up, all over the exam table and her clothes.  We cleaned up as best we could, and then the doctor came in.  He tried to look at Janey's back, and she twisted and turned, making it hard for him to examine her.  We tried to hold her so he could, but he said "No, no, it's not necessary"  I was annoyed at that.  YES IT IS necessary, when you are there for his expertise, for him to be able to see her.  I'm not an orthopedist, and maybe the x-ray tells him all he needs to know, but if he usually views a child's back, I want Janey's viewed too.  But in the midst of the screaming, and with him quickly moving to the computer and talking in a low tone about what he was seeing, I had to just listen and couldn't or didn't speak up.

When the doctor saw the x-ray, he asked if I'd held Janey's hand for it.  I said I had, and he said that made it hard to tell what was curvature and what wasn't.  Well, no-one said I shouldn't hold her hand.  I had done it to calm her, but that was at probably the calmest part of the appointment, and she might have been fine without it.  Again, we were there to get a good idea what is going on with her, so it's frustrating to not get that done to try to keep her happy.  Anyway, he said last time her curvature was 16%, this time it looked to be 20%, but "that's within 5 percentage points so it's really the same"  He said she still had a lot of growing to do, but then asked when she had gotten her first period (last September) and how old she was.  He thought she was 13, and when I told him she was 11, he looked at the x-ray part that showed her hip and said "she's not going to grow a lot more.  This isn't how most 11 year olds look" As runs in my family very heavily, Janey went through puberty very early and has a body that is far more womanly than most 11 year olds.  I didn't grow much at all after 11, nor did anyone in my family.  So her current just under 5 feet might be as tall as she gets.  I'm not sure how this affects the news about her scoliosis.  From what I could gather with the screaming, it might mean it's too late to do much about it.

We see the doctor again in 6 months.  I left the appointment feeling overwhelmed and frustrated.  I don't think she got the exam she would have gotten without the autism and tough behaviors.  I am not blaming anyone here.  I know her behaviors are on the extreme end of the spectrum, and that these doctors and technicians are not autism specialists.  Everyone was kind and tried hard.  But my feeling is that no matter how tough a kid is, give them the SAME CARE anyone would get, even if it involves upsetting them.  Five minutes of being upset and screaming is nothing compared to what can happen otherwise.  I think always, of course, of the horrible night when the emergency room missed Janey's probably already burst appendix, because they didn't want to further "upset" her.

I've heard from a few fellow mothers lately about pediatricians simply dropping or trying to drop girls with low functioning autism.  We are lucky in where we live.  We were able to switch Janey to a pediatrician that seems wonderful.  We have Mass General hospital, a top notch hospital with a commitment to caring for people with autism.  We have two kinds of insurance for her, and so financially can afford to get her whatever care she needs.  But still, with all that, Janey's autism limits our ability to get her the same health care another child with autism would be able to get.  Although the reasons for this are many, it's a situation I find hard to accept.

The Month That Wasn't

It's been a month today since the day that I got the call from Janey's school, the call that they were calling an ambulance to take her to the hospital.  It's been a month that in many ways, I would like to erase from my life.  In other ways, it's been an important month---in some ways, even a good month.  But I think it's fair to say I hope I never have another month like this one.

Here's a little synopsis of the month.  Janey's behavior, which had been escalating for a week or so, got even worse on November 14th.  I rode with her as she went by ambulance to Children's Hospital in Boston.  In the emergency room, she was assessed and it was determined she needed hospitalization in a psych ward for children.  There were no appropriate placements available right way, so we spent 6 days at Children's as boarders, waiting for a placement.  We got one after those 6 days at Bradley Hospital in Providence, and Janey was there for 18 days.  She came home after that, when they felt she was stable enough to leave.

Those are the bare facts, stripped of emotion.  Here's some of the emotion.  The stay at Children's was hell.  I can never think of another word to use for it.  The 28 or so hours in the emergency room were the deepest, darkest levels of hell, and the next 5 days in a room on a kidney transplant ward were regular hell.  Janey wasn't able to leave the room, was periodically attacking the nurses, the sitters who sat in the room and me.  She screamed extremely often, asked frantically for one thing after another we couldn't do, and slept poorly.  I don't think I'd survive another 6 days like those.  The stay at Bradley was in some ways a relief and in other ways not.  The drive to Providence was often very, very tough, both in terms of traffic and in terms of giving us time to think what we were doing---visiting our precious daughter in a locked psych ward.  The visits with her were both wonderful, because we missed her so much, but also awful, because in what was a theme for the month, we were not supposed to leave the room with her, and she would quickly become bored of us and restless.  It would become a situation where either we saw her for far shorter than we wished or we risked setting her off into a spiral of a meltdown.  Having her home, although joyous, led us to see nothing had really changed.  Janey has been often very unhappy the 5 days since she's been home, although there have been good times too.  A few days ago, she attacked my father, in a frightening repeat of what started this whole time.

What has been good?  Well, we got a letter yesterday saying we had been approved for state supplemental insurance for Janey, so going forward, we might be qualified for help with therapy and things like pull-ups.  I need to work on getting that all set up, but it's something we probably should have done years ago.  Janey is off two of the three medications she had been taking, and we are seeing some improvement in her talking, which leads to the upsetting thought that she may have been overmedicated for a while, but in trying to be positive, also means she might be no longer overmedicated.  And the greatest good part--the absolutely overwhelming and incredible support, in so very many ways, from all of you, all my friends who read this blog---those I know in person and those I know through the magic of the internet.  You are a wonderful bunch of people, and you let me live through this.  I mean that with all of my heart.

What are our fears?  We have many fears.  The biggest is that Janey is going back to school tomorrow, if everything goes well.  Her school has been wonderful, and they are eager to have her back, but we truly feel everything might repeat itself.  I have no confidence Janey is going to be able to not repeat the behaviors that started all this.  We have realized places like Bradley are not set up to change the future.  They are set up to deal with children in crisis, during the crisis, and they do a outstanding job with that.  But they are not set up to change the child.  I am not sure it's possible to do that, to be fair to them.  I don't think I'll ever relax again while Janey is at school.  I will always be waiting for another call like that horrible one a month ago, a call saying she is out of control and they think she should be in the hospital.

I will close with right now.  Right now, Janey is happy.  She is having bacon that Daddy is making---bacon made by the best father in the world.  We are looking forward to getting a Christmas tree today.  We are together, our older son William will be home from college soon, and we will celebrate Christmas and look toward 2015 with hope.  And that is enough, for right now.

Visiting Janey

Bradley Hospital, where Janey is being held, is in Providence.  In ideal conditions, it could be a 50 minute drive from our house.  However, anyone who has ever driven in or around Boston knows that those ideal conditions exist only at the rarest of times.  In some ways, the drive to get to Janey seems like a metaphor for so much of the last few weeks---frustrating, exhausting, yet crucially important.

I'll give yesterday as an example.  Tony went in to work extremely early, so he could leave at 2 and we could get an early jump on going to see Janey.  We left the house right around 3.  When we got to where we get on the highway (about 10 minutes from our house), we could see it was almost completely gridlocked.  There is s storm predicted for today, and Boston is full of college students and others who want to go elsewhere for Thanksgiving.  So Tony made a change and got on some local routes.  We used our GPS, which seemed intent on giving us a tour of southeastern Massachusetts.  After a long time, we made our way back onto the highway, and proceeded to creep toward Providence, at 10 miles an hour.

Finally, we got past an area where bridge work was being done, and we were able to make some time.  Regardless, the drive to Bradley took two and a half hours.

We had agreed a few days ago to be part of a major study of autism while Janey was at the hospital.  I spent a big part of yesterday filling out about 10 long forms about Janey's behavior.  We had agreed to have blood drawn last night.  By the time we got there, the woman we were going to meet with was gone, but a head of the study and the blood-drawer had stayed late to get the blood.  We explained the traffic, and I hope they understood, although Boston traffic seems to be something very Boston, which although Providence is quite close, they seem somewhat mystified by.

After having the blood drawn, we had to go back to the waiting room to wait to see Janey.  We were told she was a bit upset and we'd have to wait a minute or two.  When they came for us, they said she had been taking off her clothes again, and asking to go to sleep, as she often does at home, far too early.  They calmed her down and she was waiting for us in her room.

The visit on Monday was great---Janey was calm and happy.  Last night, she was less content.  It was nothing like the scenes at Children's, but she bit herself a few times and at one point half-heartedly pulled my hair.  She also did the repeated asking for things "Want chicken nuggets?  Want to take a walk?  Want water?"  We finally resorted to singing---we sang her a mixed medley of her favorite Beatles and Black Sabbath songs, Black Sabbath being my older son's favorite group.  We modified words as necessary!

After about 40 minutes, though, Janey wanted more action.  We aren't allowed to visit with her outside her room, and she wanted to get out.  So we said goodbye.

Before we went home, we needed to drive to Waltham and pick up William at college, so he could come home for Thanksgiving.  We were thrilled to be getting him home, but tired beyond belief.  The traffic was okay on the way back, but not perfect.  We took local routes home, and finally got home about 9:30.

When I got in and checked the mail, there was a badly photocopied 5 page letter from something called something like Value Health in Rhode Island.  It said they had authorized a 5 day stay for Janey at Bradley, and that any longer of a stay would have to be arranged by the hospital.  I am assuming that has been done, as today would be day 6, but I am not sure at all.  In my hazy state, the form was hard to understand.  We have Blue Cross, so I am unsure why some other agency is the one to decide on Janey's stay.  There was no number on the letter.  Instead, there was a form for JANEY to fill out to authorize me to get information on her behalf.  I need to read the form more today, but a quick look last night said this had to be done even if the patient was a minor.  I need to make calls and try to figure out what is up with all of that, but I have a feeling the day before Thanksgiving is not a good day to reach the right people.  I also know my mind is not in a great place for figuring out complicated letters and forms.  I assume the hospital would let us know if the funding for her stay had ended, but I have nightmares of multi-thousand dollar bills arriving.

And that is where we are.  Janey is calmer, but far from all the way back to what I am learning is called "baseline".  We are tired and stressed almost beyond functioning, worried about Janey and money and what comes next.  Today the weather will keep us from visiting, it seems, and although the drive is a nightmare, it kills me to think of a day without seeing Janey.  Nothing feels settled, nothing feels calm.  And I wonder if it ever will again.