Khabarovsk Station; Pulling out Slowly as an Outpatient

September 19, 2016:  Anybody who has known Christopher since he was tiny knows that he has poor frustrational control--or, in the vernacular, when he has a meltdown, it is nuclear in proportion.  He was an incredibly colicky baby, a highly volatile toddler, and hasn't ever responded well to calming techniques or disciplinary action.  As he grew older, he didn't erupt as often, he became able to take direction from non-parental adults, and he recovered more quickly from nuclear mode.

When he began Math-U-See Gamma several years ago, he quickly determined he wasn't a very big fan of the videos.  "Mommy, he doesn't make sense.  But if you sit next to me and help me work the A lesson problems, I can do the rest of the chapter on my own.  I like when you teach me."  We continued watching the videos, I continued sitting next to him for A lessons, and I pulled out manipulatives as often as he'd let me.  But that broke down last year.  He refused to watch the videos, he didn't want my help for A lessons (or anything else), and he went ballistic anytime I brought out manipulatives or tried to redirect his problem-solving.  In other words, he'd completely lost the ability to be flexible in his problem-solving approach.  This struggle with schoolwork, coupled with digestive upset and headaches, is what purchased our ticket onto the Transiberian Railway in the first place.

This past April, we were at my parents' ranch and he didn't understand the fractions exercise he was working on in Khan Academy.  I rolled up my sleeves, tried to explain the concept, he again declared it didn't make sense, I tried again, he told me it would never work, I tried to take a different tack....meanwhile, his fists were balled, our voices were escalating, his carotid was bulging, and then his headache exploded.  My mother's comment was that she'd get a headache if she got that frustrated, too.  I now know, this was perseverative behavior.

What we didn't know then was that an AVM was sitting in his brain, hogging the blood his anterior cranial artery was supposed to deliver to his right frontal lobe.

One of the recommendations from neuropsychology for schoolwork is that he be taught to use multiple methods to solve problems to increase brain flexibility, promote frustrational control, and reduce perseveration.  So going back to our old math routine seemed like a good idea.  Today, Monday, was an A lesson day.  Perfect way to start the week, right?

Yeah, I was nervous.  

First up:  Expectation setting is key, he hates changes in his routine.  Always has.  So I made sure to tell him Sunday what the A lesson routine will be this year so he knew what to expect.

Math-U-See Zeta, Chapter 5, subtracting decimals with borrowing.  Subtraction with borrowing is something he’s always needed a reminder lesson for if it’s been awhile since he’s done it.  So I told him we needed to pull out the math models and model three problems on the floor after he finished watching the video.  He just wanted to do it pencil/paper “because I already know what to do!”  And, of course, this is the year he just flies through it and and is getting them all right with just paper and pencil.  But I felt like we needed to set precedent and establish routine.  It took me being really firm and telling him that if he continued working problems on his own, I’d just make up extras for him to model, but he did it.  No shouting, no balled fists, no bulging carotid, no headache spike.  He was even still in a good mood when we were done.

I tried to point out how awesome this was, but I basically got the, “My brains, his steel, and your strength against 60 men and you think a little head jiggle is supposed to make me happy?  Hmmmm?” reaction from the Princess Bride.

But just so you all know, this was really, really huge.  This wasn’t just a return to baseline, this was a step beyond baseline.

The kids playing sidewalk chalk while I supervise writing this post on a playground bench; Christopher is not currently allowed to be without adult supervision, but both the dog and the cat decided to help.

Christopher and I have different definitions of massaging his scalp gently in the shower.  But, 1 month after surgery, the scabs are now gone.  Stitches are beginning to dissolve.  Hair is even regrowing in the incision line.

Sept. 17, 2016:  Learning to walk again is hard.  Really hard.  Trying to return to normal is harder.  Because it isn't just about learning to walk.  It's learning to jump, to run, to do a bench pose, to stand on one leg without falling.  It’s stretching out and using muscles that haven’t been used at all in a month.  It’s trying to fit in with friends that can just go on a run or play soccer or play tag while you're limited to short walks and quiet indoor activities.  It’s being stuck at the top of the stairs for an hour because you’re awake, but your mom is at swim team practice with your older brother, and you’re still not allowed to do stairs without an adult escort.  It’s being lonely.  And without hope.  And scared.  

Christopher’s recovery so far has been amazing.  From an adult perspective, from the outside, looking in.  For him, he’s still in the middle of a nightmare, but he doesn’t talk to anyone but me about it.  Even I only get glimpses.  He says he’s just trying to forget it all.  So the boy who used to come curl up at my side at bedtime every night this summer and talk to me about his fears is gone.  He’s angry at me, he’s frustrated, and I’m not entirely sure he trusts most adults anymore.  Christopher is The Boy Who Lived.  If he hadn’t had a Chiari, if we hadn’t taken his Inova MRI to Johns Hopkins for a second opinion, if he hadn’t had a team that felt comfortable operating in the motor strip, we wouldn’t have found the AVM at all, we wouldn’t have removed it, it would have ruptured in the wild.  As adults, we can clearly see and understand all of that.  The child, no matter how brilliant, no matter how clearly he understands the facts of his medical conditions, has little insight into his treatment plan, let alone respect for his safety restrictions.  He only knows that everything is always worse than he expects.  That the pain never goes away.  That adults promise “at the next appointment, we will ….” and then change the plan.  He thinks that hope is pointless, because it leads to disappointment.  His neighborhood friends no longer ring the doorbell except to see if Alexander can play outside.  They’ve all gone back to school, and are spending their free hours soaking up the sun and fresh air and exercise.

Brain Therapy via Game Play, putting scientific discoveries/events in timeline order

None of this is normal.  We’ve been home from the hospital for two weeks.  I didn’t expect him to magically be better by now, I just didn’t realize how much pressure I would feel to look normal to the outside world while we’re still struggling just to survive each day.  He’s not in PICU, he can walk, dress, and feed himself, so everything feels like it should be homeostatic, not in crisis.  The reality is that this was the first full week of extracurriculars for my other two children, and our first week without family here to help.  So it wasn’t a stable week, a plateau from the curve we’ve been climbing since March.  It was yet another hill to climb.

For months I’ve heard that I’m such a strong and able person, Christopher couldn’t have a better caregiver to see him through this train ride. I’m not sure I ever felt as capable as all that, but certainly I was able to schedule the appointments, research all the options, bolster him through to surgery, and generally function through my week. I had a few massive anxiety attacks, I had to be careful what songs I listened to while driving. But now, I can’t shut down, can’t stop deliberating the slightest of details, can’t think about much of anything that isn’t related to getting off this train. I’m not really sleeping any more now than after I instituted a melatonin regimen to deal with the call alarms, bright hallway lights, and night-duty nursing calls of Kennedy Krieger, despite being in my own bed and a dark, quiet house. Going to sleep isn’t a problem, I have the exhaustion of more than 6 weeks averaging less than 3.5 hours’ sleep every 24 hours on my side. And thanks to melatonin, I can now sleep for one full sleep cycle, which ranges from 4 to 5 hours. But then I wake in a panic, thinking of all the things that need to be scheduled and researched, obsessing over safety restrictions and neuropsych evaluations hours before the rest of the household awakes and my day officially begins. My attention span is shot, I can’t read anything that isn’t brain-related, and even then, I’m usually too exhausted to stay awake for more than a few sentences. My whole neck went into such spasm after trying to do shoulder stands with my daughter Labor Day I had to break out Flexeril leftover from a dislocated rib several years ago. For the record, I’ve always been able to just pop into shoulder stands without a problem, and did so the last week in July. I nearly went to urgent care to make sure I hadn’t cracked a vertebral spine, I was in such pain, but decided it really was just soft tissue inflammation. Flexeril, a sport therapy essential oil mix, an epsom salt bath, and a massage undid the worst of the damage, but didn’t stop the insomnia, anxiety attacks, or crying jags. I have a new personal record of 17-hours for one continuous anxiety attack, something I haven’t really dealt with since passing my candidacy exam in graduate school. I scheduled an appointment with my PCP to discuss the insomnia, and my doctor diagnosed me with PTSD anxiety and insomnia. She says it’s not in my DNA to break down in a crisis, it’s just not something my brain would even consider four weeks ago in PICU.

So, our current situation is apparently stable enough for PTSD symptoms.  Yippee.

On the upside, renewed swim team practices for my oldest mean scheduled time and accountability for me to start working out again for the first time since the end of June.  Running on the elliptical and yoga for anxiety with my favorite YouTube yogi stop neck spasm pain for 24 hours.  My doctor gave me Ambien to do a hard reset on my Circadian cycles now that we’re out of the hospital.  My last crying jag was post-endorphin rush on the elliptical yesterday.  

Normal is hard.  Not unimaginable, but hard.  So for now, this is my theme song.

Mumford and Sons, After the Storm

And after the storm,

I run and run as the rains come

And I look up, I look up,

On my knees and out of luck,

I look up.

Night has always pushed up day

You must know life to see decay

But I won't rot, I won't rot

Not this mind and not this heart,

I won't rot.

And I took you by the hand

And we stood tall,

And remembered our own land,

What we lived for.

But there will come a time, you'll see, with no more tears.

And love will not break your heart, but dismiss your fears.

Get over your hill and see what you find there,

With grace in your heart and flowers in your hair.

Final OT Task--Complete the 3D Eiffel Tower Puzzle for Discharge!

Sept. 11, 2016:  Christopher has now been home a week.  He spent his last days at Kennedy Krieger Institute getting through therapies with a countdown, but when Scott arrived to drive us home, he didn’t rush out the door.  Granted, he was playing Mario Brothers with one of his KKI friends in the therapy center, so we went to grab lunch at the Hopkins cafeteria and then came back, at which point he insisted he finish his game of Uno with the staff.  But at noon, the therapy center closes for a lunch break and we were out the door.  He didn’t want to return to the floor to say goodbye to his roommate or friends, but he was definitely emotional and holding back tears as we walked to the parking garage.  I hadn’t slept well the night before myself—as much as I wanted to go home, I did feel as though we were suddenly being thrust into the wild.  KKI is a very controlled environment, from building temperature, to administration of meds, to therapies scheduled in half-hour increments 8:30am-3:30pm.  Our home, with a Labrador, two cats, a preschooler and pre-teen, and all the activities pertaining to each, is not.  And now we were bringing home a young boy who was desperate to return to being a normal kid.  And yet he had a whole lot of restrictions still placed on his freedom, but would be surrounded by siblings and a neighborhood of able-bodied kids.  I wasn’t sure how he’d handle that reality.  Or his new outpatient physical therapist, or the requirement he return to KKI every Friday for outpatient behavioral psych therapy.

Luckily, my best friend John Gipson anticipated it might be a rough week and arrived at our home only a few hours after we did to help us navigate our first week in the wild.  Having an extra adult around was definitely a godsend.  Both Sabrina and Sunshine are more clingy than usual, so it was nice to have him around to help Alexander walk the dog (and get Starbucks treats midway), and to play puzzles and board games with the kids while I was managing outpatient appointments.

Christopher’s first several days home were definitely exhausting, as showcased by the purple circles under his eyes.  We noticed months ago that you can tell how he’s feeling more by the degree of bruising beneath his eyes than by what he’ll self-report.  He understands better than anyone that his pain can’t really be managed by meds, so he ignores it as much as possible in order to attain what behavioral psych calls “functional pain”.  But if you then ask him how much pain he’s in, he has to focus on it in order to report a number on the 0-10 scale he loathes, which forces it back into the forefront of his attention.  No bueno.  Being away from nurses and therapists that ask how his pain is every few hours has definitely been helpful.  Sleeping in his own bed without interruption has, too.  As he got stronger at KKI, he started having the same problems sleeping through the midnight disturbances I had.  I made sure to complain about that in our exit reviews, as Kennedy Krieger’s nighttime protocol not only doesn’t match the policies in place at Johns Hopkins, it doesn’t match our current understanding of the importance of proper, uninterrupted sleep to pediatric recovery.  

During a normal school year, there are no fun screens Sunday 6pm through Friday 3pm.  During the summertime, even after completing a checklist of basic school, creative, active, and social activities, fun screens are limited to 2-3 hours a day.  In one of our last inpatient sessions, Christopher’s behavioral psychologist (BP), Rachel, felt that we should give him a checklist that includes schoolwork, chores, and therapies, but that he should have unlimited screen time thereafter as a reward for making it through the therapies he really detests (like BP)—particularly because he is absolutely not allowed to climb trees, play tag, play soccer, ride his bike, or even traverse the stairs alone.  So instituting a new Post-Op Screentime Rules posting was one of my first at-home projects to prepare for the week ahead.

Labor Day Weekend threw a mild wrench in making contact with and establishing outpatient physical therapy, but we managed to get an evaluation scheduled for Wednesday evening.  Christopher’s new therapist, Hannah, is pretty amazing, and was impressed enough at his evaluation (especially given the 20-page report KKI had sent over for her to read), that she told us she intends to start lifting some of his restrictions as soon as she gets a better feel for his endurance.  But there is already less 1-on-1 spotting, and more active exercises, which makes Christopher really happy.  He was less happy doing the evaluation, as his PT spent a good 30-40 minutes asking all kinds of questions about his early developmental milestones and pregancy/delivery status.  She was very surprised that Christopher was an early walker (9 months) and talker (75 words at 14 months) given the location of his AVM.  We then had PT itself Thursday morning, but not with his regular therapist.  Because we scheduled the appointment after 6pm the night before, and showed up for therapy at 9am, she definitely didn’t have time to read the 20-page history and asked me a bunch of questions about the symptoms which led to the Chiari I/AVM diagnosis.  She did get right to giving him exercises, so he wasn’t waiting around during this conversation, but he was definitely upset we were talking about it all to yet.another.person.  But the reason we are still doing pediatric neuro PT, is that Christopher’s body is technically perfect, if a little weak from limited use.  He’s in therapy to correct and strengthen the communication his motor and sensory strip make with his left side.  And that requires his therapists know the background of this year….in less than the nearly 20,000 words I’ve written so far, but in more than the 200 Christopher would offer.  He shouldn’t have to tell the story too many more times at PT, though, as we will work primarily with Hannah once we get into our regularly repeating appointments, not the holes they found for us to get into the system.

We originally wanted to find a behavioral psychologist closer to home for outpatient therapy.  But there is nobody in Fairfax County, VA on our insurance plan that doesn’t have a one-year waiting list.  Think about what it says about our nation’s mental health awareness and priorities that we make it so incredibly difficult for even kids suffering traumatic brain injuries to get help.  It’s ridiculous.  We could go to the outpatient clinic at the main campus of Children’s National, but honestly, it’s not that much closer than Kennedy Krieger in Baltimore.  And after seeing her a dozen times over the course of his stay at Johns Hopkins and Kennedy Krieger, my little introvert is finally starting to feel a little comfortable with her rather than openly hostile.  Since she knows behavioral psych is not his favorite activity, we spent our first outpatient appointment with Rachel on Friday working out a 10-point Behavioral Plan that Christopher helped compose under her guidance and then signed.  It has the concrete goals he has to attain in order to cease therapy.

Neuropsychology’s guidelines were for us to spend our first week as outpatients adjusting to the new routine and allowing his brain to rest, so no schoolwork, but the team did feel he was ready to begin his first quarter classes at Compass Co-op Wednesday with everyone else.  Christopher woke up in a lot of pain, complaining he hadn’t slept all night, and asking to remain home.  I’m fairly certain it was an anxiety attack about new classes, new teachers, and his new limitations.  But where before surgery, convincing him to go would have required first offering an extra privilege and then removing nearly all regular privileges in an escalating conversation, we were able to have two quiet conversations about the importance of attending the first day despite his pain.  I did offer an early return with Uncle John if it became too much.  And then we went.  He has chess, Minecraft, and STEM: Wall and Bridges (materials science and engineering for 3-4th grade), each one hour classes at 10am, 12pm, and 2pm.  I had emailed the director and his instructors ahead to explain his surgery and the potential for working memory and attentional control gaps.  But his teachers said he was fully focused in all his classes and had no behavioral problems.  Despite the fact that he spent his one hour breaks curled on a couch reading to combat his pain, his teachers said he was all smiles in class.  He has the same instructor for both Minecraft and STEM, and she said she’d have never known he’d just had such an intense surgery if I hadn’t said anything.

And now we are ready to begin our first week of school.  Again, our guidelines from neuropsych are a very gradual return.  I don’t have to change or modify our curriculum from our original plans, as they feel he is academically unchanged, we just have to slowly build to a full school day.  So this week, we do one subject, with no big tests or assessments or major assignments.  Christopher says we’ve taken so many weeks off school, he wants to begin with math before he forgets any more than he already has.  The beauty of homeschooling is that these accommodations are really quite easy to implement.  And since his checklist includes tasks like crafts, board/card games, sibling play, and PT homework, we’re already including exercises which will help him recover both his executive functioning and his fine and gross motor skills and speed.  Next week, we’ll add another subject.  And because we started schoolwork in August, with Alexander working on math and history while Christopher was in the hospital, I can give Alexander a relaxed schedule during the ramp-up to allow him time to engage in crafts and games with his siblings.  My hope is that this will bond us as a family and prevent resentment for Chrisotpher’s extra “free time”.

Most importantly, the circles under Christopher’s eyes are mostly gone, his face is generally relaxed, and he smiles and laughs a lot.  He is still getting stronger every day and he spends most of every day functioning through his pain, even if evenings often cause a crash.  Life is good.