Khabarovsk Way-Station, the Neuropsychology Evaluation

When I met with neuropsychology, Megan gave me the Cliff’s notes of their evaluation and diagnosis, as well as a list of modifications for Christopher’s first few weeks home.  His AVM had two primary feeding arteries.  One of them was his anterior cranial artery (ACA), which is supposed to feed the right frontal lobe.  It is therefore their hypothesis, after looking at both his pre- and post-operative scans and scoring the tests they administered that week, that the AVM has altered blood flow to his brain since birth.  Megan stressed that because he is so bright and socially well-adjusted, they had to search pretty hard to find the areas where he is weak.  The brain swelling he experienced post-op was therefore an extreme exacerbation, in their view, of cognitive deficits Christopher has had his entire life.  The right frontal lobe is responsible for executive functions.  

“Executive functions (also known as cognitive control and supervisory attentional system) are a set of cognitive processes – including attentional control, inhibitory control, working memory, and cognitive flexibility, as well as reasoning, problem solving, and planning – that are necessary for the cognitive control of behavior: selecting and successfully monitoring behaviors that facilitate the attainment of chosen goals.^[1][2][3] Executive functions gradually develop and change across the lifespan of an individual and can be improved at any time over the course of a person's life.^[2] Similarly, these cognitive processes can be adversely affected by a variety of events which affect an individual.^[2]   (Wikipedia)

Most of the symptoms he had during the first week after surgery definitely fit in this definition.  What I’ve been calling short-term memory blips, neuroscientists call working memory.  The good news is that Christopher scores in the 99th percentile in verbal reasoning skills and in the superior range for nearly all the math and verbal skills they tested.  They still haven’t finished the official report, which BP will use to guide his weekly therapy sessions, so I have notes from our meetings, but haven’t seen his actual normed score report.  His attentional control scored 9th percentile, which is a mild impairment.  I know they also saw significant weakness in impulse control, visuospatial organization, working memory, perseveration, flexibility, and emotional control.  Some things, like impulsivity and emotional control, his therapists observed more during his stay at KKI than what showed up on the official evaluation.  Megan is cautiously optimistic that Christopher will make a full recovery to his baseline within a year of surgery.  And since the frontal lobe is the last part of the brain to develop at 25-28 years old, he has plenty of time to overcome any remaining deficits in order to become a fully functional and social adult.  But it does explain why he was the colicky baby to end all colicky babies, has always been prone to easy frustration and nuclear meltdowns, and has always had anxiety attacks.  I’m not at all sure I agree that he’s always had attentional control problems, though, or widespread impulsivity.  Scott and I do think, as we review the events of the last year, that many of those things came into play as his symptoms progressed and he entered crisis mode.  We have already seen an improvement in a few areas in the last couple weeks, which makes us hopeful that the simple removal of the AVM could be tremendously helpful for him once he’s healed from the surgery itself.  His behavioral psych appointments will help remediate the rest.  

Behavioral psychology is also in play to help give Christopher coping skills for his Chiari pain in the months ahead and to prepare him for the next surgery.  He generally doesn’t talk about it, but there were several instances during our stay that he told me, “Brain surgery has been so much harder than I thought it would be, I don’t know if I can do this again.”  To be clear, he does actually still want the Chiari surgery, and he’s never said he wouldn’t do it.  He was just very, very scared that he’d end up at Kennedy Krieger learning to walk again.  So I spoke with Child Life, his BP Rachel, the KKI attending physicians, and his physical therapists about his fears, and they have assured him that the Chiari decompression surgery is a very different, much easier procedure.  Not only is it skull base surgery rather than an open craniotomy, and therefore not going anywhere near his motor strip, sensory strip, or frontal lobe, but it technically won’t dissect brain tissue at all.  The neck muscles will be moved aside for the procedure, so he is very likely to need outpatient PT to strengthen those muscles and put them back into a normal conformation.  He didn’t believe me when I gave this explanation, telling me that since the odds of what has happened this surgery were incredibly unlikely, I don’t know that he couldn’t have an extremely unlikely outcome next time.  It’s not an illogical conclusion, so I couldn’t just dismiss it out of hand.  But he’s heard it won’t happen from enough of his medical team, that he says he no longer feels anxious.  The first surgery is done, he's walking easily again, and he is confident the next surgery won’t be so horrific.  He still wants to continue doing his anxiety meditation series, however, just in case his anxiety relief is due to his daily meditations.  Smart kid.  

Rachel is also planning on using her needle desensitization kit on Christopher to both alleviate his fear of IVs and arterial lines, and also so that he’ll allow us to attempt acupuncture for his Chiari pain.  His goal is that we can dial the pain back enough to take his baseline pain from a 5/6 down to a 4/5.  Level 8 pain is generally when he curls up into a ball and stops functioning, but the 5/6 he lives with most of the time leaves him an awfully short fuse for handling any daily frustrations that come his way.  The behavior psych department at KKI also has a mock MRI she intends to use to help Christopher prepare for his post-op brain scan that’s soon to be scheduled.  He has no problems at all with CT scans, which are silent and over in a few minutes.  But MRI machines are extremely loud and take 30 minutes (or more) of absolute stillness.  Between his first brain scan and his full spinal scan, the stillness is obnoxious but not a deal-breaker.  But spending half an hour in a very loud environment he knows will make his headache worse is rather frightening.  So.  The mock MRI it is.  

Khabarovsk Way-Station, Kennedy Krieger Institute

September 1, 2016:  The AVM surgical site causes more itching than pain these days.  Good in that he's nearly done with the scalp healing, bad in that there's nothing that can be done to stop the itch.  Christopher says the bone no longer clicks and pops, which means enough little bone bridges now extend from the piece they removed in surgery to the rest of his skull to secure it in place.  So that weird sensation is over.  There wasn't much visible swelling in the scalp after the second day, except when Christopher would probe his bald spot with his fingers.  Then it looked like his fingers were pushing into jello as the swollen tissue bounced and displaced--which creeped me out to no end.  That swelling is now gone, no movement when you probe his scalp.  Thank goodness.  The stitches haven't started dissolving yet, but the scar looks like it will be nice and narrow.

Christopher's incision site, Day 11 Post-Op

Before they went back home, Scott and I stayed Sunday evening and played hearts with Christopher.  The kid can nearly count cards perfectly:  lays the 10 of Clubs, Scott lays a diamond, "I thought the 6 of Clubs was still out there," as I lay said 6 of Clubs.  The twerp also prevented me from shooting the moon because he had the foresight to not throw his Ace of Clubs in an early trick--it was the one card that could stop me.  So.  The card shark areas of his brain are clearly intact and Scott is planning on taking him to Vegas after he turns 21.

Notice the grin.  Evil.Genius.

Christopher’s team meeting was yesterday, and I know from his social worker that they continue to be really pleased with the progress that he is making, but I am still waiting on the formal notes.  He is walking well enough that PT is working on muscle strengthening exercises as a warm-up, but spending most of his PT sessions walking increasing distances, climbing stairs, and playing games that work on his core balance.  He even rode a therapy trike yesterday.  He has also been cleared to walk to all of his therapy sessions rather than using the chair.  Tuesday he walked to all therapies in the morning, but was exhausted and went back to his wheelchair for the afternoon.  Wednesday, he walked all day, even going over to the Johns Hopkins cafeteria and back at lunch.  OT is also focusing more on balance and hand-eye coordination games, usually modified versions of activities like lacrosse, bowling, or wall ball.  OT Scott seems to realize how important physical activity is for Christopher and has been doing more active games this week than sit-down fine motor skills.  The main concern outside of ankle strength, at this point, is that he has inconsistencies in left side strength and balance.  He'll look so good doing a drill, you relax (even the therapist), and that's when a muscle blips and he loses his balance.  PT Amy says it's most likely to happen when he has to change his focus or someone starts talking to him.  So, focused walking is doing really well, but it's definitely not yet an autopilot activity for him.  OT Scott has also noticed that there is still significant weakness and drooping in the left shoulder muscles (everything attaching to the scapula), more so when they are challenged than when he is standing still.  He’s planning on giving me exercises for home to strengthen them, as he still feels that Christopher doesn’t need OT after discharge.

Oh!  He can do small jumps as of yesterday!  And he maybe sorta almost ran while holding my hand to catch an elevator at lunch.  Shhhhhh.  PT Amy says that, unassisted, Christopher has to keep both feet on the ground except for the small jumps, but she is clearing him to climb provided he has a 1-on-1 spotter at all times.

This all means Christopher has a lot of fun and smiles frequently in PT/OT sessions, but it also means he's just exhausted all day.  Now that he's off bed rest, the Chiari is triggering exertional headaches most of the time, where it had been mostly below a 4/10 in Bloomberg Tower.  He says the Tylenol he takes for surgical site pain does not touch the Chiari headaches.  This was expected, and it confirms that he'll still need the decompression surgery, but for now we're left with relaxation techniques, rest during breaks, and warm baths/compresses to mitigate pain at home.  It just sucks to see him wandering through his day with purple circles under his eyes.  

I've brought Christopher's headache specialist into the loop via email since we can't get him in to see her (or her to him) while he's inpatient at KKI.  She added 100mg B6 vitamin to his regimen yesterday to mitigate anxiety attacks, since Keppra is known to decrease B complex stores, but is otherwise keeping his migraine protocol the same for now.  She says the Keppra, in addition to preventing seizures, is offering some headache protection, and we'll just have to use the reglan/benedryl cocktail to rescue headaches for awhile longer.  He had a starter migraine yesterday (eyeball pain, upset stomach, frontal lobe headache), and giving him reglan/benedryl with his 8pm Tylenol calmed his stomach enough for a late dinner and kept the pain from escalating.  His nurse and I decided to call that a win.

Speech and Language Therapy moved beyond vocabulary and memory skills and tested reading comprehension using the CELF5 assessment yesterday.  He sort of groans when he goes, but he likes Ms. Kristy and does well in his SLP sessions.  She is a bit concerned about his handwriting, and since cursive/print transitions caused massive headache spikes in June, OT checked his handwriting out today.  Compared to his chem lab writing sample August 12, there’s no noticeable change in letter formation or word spacing, but he is probably slower than he had been.  Yesterday was the last session of Neuropsych testing, and he definitely did not like that.  He did it all and worked hard, but wasn’t as animated as in his other sessions and didn’t try to hide how bored he was.  I'm sure it doesn't help that he spent an hour Tuesday doing memory work with lists, numbers, and figures, both testing and exercising short-term memory gaps.  It was explained to us by a good psychologist friend that, as tedious as neuropsych testing is, it’s also training his brain and helping him move forward.  So, for this week, neuropsych has been his school.  He liked that explanation, but told me, “But I usually like doing school….”

The memory gaps are definitely still there.  I notice them most if I leave, as I get a text 30-45 minutes later asking where I am.  So instead of just telling him where I'm going, I text it to him, have him repeat it back to me, and I'm going to start putting it on his message board.  He still sometimes accuses me of lying when I make reports to his team about aspects of his progress, but I think it's decreasing in frequency.  I meet with Neuropsych this afternoon to get the full assessment of his testing, so I should learn what the precise deficits are in memory and other skills, as well as the recommended modifications for schoolwork and life.

Behavioral psych is was a lot better yesterday even though I still don’t think he actually likes it.  They are the group tasked with giving him coping skills for the behavioral deficits left by the post-op swelling as well as the emotional trauma of what's happened to him.  It's really hard living in a fish bowl.  He has no privacy anywhere, no quiet places, he's incredibly homesick, and he's required to have a spotter for even the most basic tasks.  Luckily, we only have two days.  I don't know how families manage these conditions for months, except that we all manage the impossible when our kids need it.  Christopher still has a lot of anger about what's happened to him and he's really scared this could all happen again after his next surgery.  I need to speak to behavioral psych about this, I'm not sure it makes sense to keep hammering home "coping skills" without addressing the underlying, very real, frustrations, anger, and fear of his immediate situation.

We are still moving along for a discharge Saturday.  The nurse case manager here is working with me to transfer his care to outpatient facilities that will be set up for his first appointments next week.  She is also making certain to pre-authorize everything through insurance.  It looks like his only regular therapies will be physical therapy and behavioral psych, although follow-up appointments are already in place with rehabilitational medicine and neurosurgery in September and his whole care team in December.  Children’s Therapy Center does pediatric neuro PT and is only ten minutes from our house.  Behavioral psychology is harder.  The ones in private practice don’t do insurance at all and our insurance company doesn’t answer the phone number we have for the necessary pre-authorization.  Inova technically has psychiatry services, but only for existing patients.  Children’s National has a satellite location in Fairfax, and is a great group, but they have a one year waiting list.  So Christopher will stay with his current BP here at Kennedy Krieger and we’ll just have to drive to Baltimore once a week until his appointments start spacing out.  Insert rant on how abysmally we handle mental health services in our country here.  His rental wheelchair has arrived, I am sitting next to it as I type.  Mike, the equipment manager, will check it out today and Amy will have Christopher use it in therapy this afternoon to make sure it is properly adjusted for him to use.

So.  Two more days.  We are technically still in crisis mode (more on that after I get debrief by neuropsych this afternoon), but it feels pretty stable.

Jail break!  We loaded up the Suburban with people, animals, and luggage to try to bring home to him.

August 27, 2016:  I went home last night for the first time since surgery ten days ago.  I wanted to sleep in my own bed again, and Alexander and Sabrina both declared that they wanted to come visit Christopher this weekend, so I went home to pack while Scott stayed with Christopher for the night.  We decided that since he can't come home to see his precious animals, we'd bring them to him.  Sunshine, our yellow lab was thrilled to be going on a car trip.  Alfred, his cat, not amused.  But we came, we got our 6-hour pass to take Christopher off Johns Hopkins Hospital property, and we took him to Homewood Suites.  As thrilled as he was to see his animals, the chaos of the outside world (and his preschool sister) made him rather anxious to return to Kennedy Krieger after just four hours. He's also decided he really needs a parent to stay with him in the hospital, despite how much he loves his LaoLao--he certainly barely said goodbye anytime he's stayed with her before, even when we visited Texas in May and he did okay the other night, even though he was up much later than usual.

August 26, 2016:  Christopher's Steering Meeting.  Everybody was already in the room when we were ushered in, seated around a long oval conference table, with extra chairs tucked in the corners, and we were suddenly faced with his entire care team at once.  I knew he had a lot of people working with him, but it was rather overwhelming to see them all together, as it was all the primary physicians, clinicians, therapists, graduate students, and residents, or about 1-2 people per specialty.  Scott said something about it being like my candidacy exam.  The analogy is pretty apt.

The meeting started with a date:  everyone feels quite confident that Christopher will be discharged at about 11am Saturday, September 3.  He's made so much progress this week, and his initial insurance authorization was seven days, so I was actually surprised they're planning on keeping him through next weekend.

Everybody is still really pleased because Christopher is making daily progress even though they'd expected it to start being weekly at this point, even with the inpatient rehabilitation regimen.  Medical is pleased with his progress and will bring in pain management to discuss changing his migraine protocol once we get to 14 days post-op.  

Physical therapy is very pleased because he can walk over 300 feet with only spotting assistance and can walk both up and down stairs step over step as well.  He still lacks proper motor control of his ankle joint (dorsiflexion), however, which is causing hyperextension of his knee, risking injury to both the knee and hip joints.  PT Amy has tried lots of tricks to get him into an orthotic to hold the foot in position out of therapy while she works on strengthening it in session, but it causes too much irritation to his skin.  As a stop-gap measure, he has kinesio tape triggering dorsiflexion, which works well, but not as vigorously as an orthotic would.  PT feels pretty confident that he will not need the wheelchair in the house upon discharge, and that they will issue us a rental chair for long outings and co-op only.  They even think he could probably manage co-op on his own two legs physically, but worry it would overly drain him for full participation in his classes mentally.  She does feel that he will still require intensive PT as an outpatient, starting at 3x weekly.  Even though his deficits are fairly straightforward, she would like him to remain in a pediatric neuro PT practice during the intensive PT cycle.

Occupational therapy says that Christopher has really regained full fine motor control and strength in the left hand, with only minor weakness in the left arm, and OT Scott will not be recommending him for outpatient OT upon discharge.

I can't photograph KKI staff, but this photo shows his difficulty keeping both arms level, particularly on an unstable surface.

Speech and Language Processing was not present Friday, so we do not have a full report.  We do know that on the 0-21 year old vocabulary assessment test, Christopher holds the Kennedy Krieger top score and registers a 20-year old's vocabulary.  We know his listening skills are at least on par for his age level, but do not yet have the official report.  Regardless, he is now released from SLP care.

Neuropsychology says that Christopher scored well on the initial assessment, but because they know from talking to him and from examining his latest ITBS scores, he is a very smart child, they are spending the next week performing an extensive, fine-tooth battery of his cognitive skills to see what deficits are still presenting from the trauma of surgery and post-op edema.  He has progressed so rapidly since leaving PICU that it is not appropriate to use the Rancho scale to mark his progress and they have to look much deeper for specific issues.  I have completed my "homework" which was to fill out neurobehavioral assessments based on my memories of January 2016 Christopher and an extensive history of his developmental milestones and infantile behaviors (e.g. colic, age of walking, age at first word).  January 2016 Christopher was chosen because they wanted to choose a point prior to the headaches changing his behaviors...they say there is a distinct possibility the AVM was also at play.  Looking at his pre-crisis history is important not just to create a baseline, but also because the executive functions he struggled with most prior to the trauma are most likely to be affected now and to take the longest to heal.  Neuropsych will also examine all his brain scans, both before and after surgery, to figure out the pathology of his injury.  They are optimistic that, 12 months from now, any remaining cognitive deficits will be very subtle.  They will follow up at regular intervals during that period.

Behavioral psychology is going to continue using the feedback they get from everybody else to help Christopher cope with his current physical and cognitive limitations so that he has a "coping toolkit" upon discharge.  I believe they will continue working with him as an outpatient, but honestly, this meeting was only allotted 30 minutes, and it was hard to keep up with my notes.  I'll follow up at his next BP session.

Recreational therapy says that Christopher is doing well in both group and individual play sessions, but they are wanting siblings added to the mix so they can see both how Christopher interacts with his siblings and whether they need some help learning to play in ways that are safe for him.  Given that a) we homeschool and don't want Christopher enrolled in Baltimore City schools, b) education only works with the kids one hour each day, and c) Dr. Ahn very specifically says no formal lessons for Christopher for the first three weeks post-op, he will spend that time doing additional recreational therapy.  This is perfect, as they use the same play modalities I would be using at home during this "he gets a break" (Ahn's words) had he not needed inpatient rehab.

Christopher's nurse case manager is just exceptionally pleased with his progress.  She's seen a lot of AVM patients over the years, and she made a point of saying how incredibly lucky he is that it didn't rupture "in the wild".  It would have been devastating.  Seeing the progress he has made both physically and cognitively in the last ten days, and having Christopher mostly back as "Christopher", we are appreciative of that.  

So.  We have seven more days in rehab.  And we will have another steering meeting Wednesday to discuss most of the details of discharge and his operating instructions at home.  We have already been told to hide all bikes, scooters, skateboards, and soccer balls until after the Chiari surgery.  When we told Christopher the news, he did pretty well with his discharge date, but he was very frustrated he can't ride a bike or play soccer with his friends.  Honestly, there's no way he has the balance for that now, but he thought he'd be fine.  TBI logic is a whole other realm.

This fun gift produced a lot of giggles!  We signed him out of KKI to take the tunnel system over to the Johns Hopkins Hospital cafeteria for dinner while we told him about the Steering Meeting.  He thought it was very much a Percy Jackson Labyrinth kind of thing.

August 25, 2016:  We arrived at Kennedy Krieger after noon on Tuesday, so Christopher's first official day of evals was not until Wednesday morning.  Breakfast was off because his stomach was offended enough by the smell of hospital pancakes he developed dry heaves in short order.  Zofran to the rescue!  And a Fuji apple from home, some blueberry kefir Scott smuggled in for us, and half a graham cracker later, we were ready for his first appointment.



Occupational Therapy is the process of learning the daily skills you need for life and job.  So it includes mundane tasks like getting dressed and bathing, but also, since Christopher us a student, fine motor skills of the hand.  So OT Scott came in to help Christopher dress in real clothes for the first time since surgery.   The zipper and button didn't present problems, so Christopher can brush his teeth and get dressed with just some balance help.  Just as we finished that, Christopher's wheelchair arrived.  It was sized just for him, and seems quite comfortable.

In the therapy center, play reigns with Megan.  I'm not sure what was being evaluated, but Christopher played Uno with the play therapist while she asked him questions about his favorite about sports, activities, and games.  My understanding is that his other therapists will give her skills they'd like him to work on, and she'll find games/instruments/crafts that meet those skills during his individual time with her.  But the therapy center is also where Christopher can go in his free time to play with other kids on activities of his choice.  Yesterday, he was all about Mario Brothers on the Wii, as video games are an option in the afternoon and evening.  He has made a point of knowing where in his Therapy binder the Therapy Center schedule is so that he knows what times crafts, puzzles, games, etc are.

Next up, Physical Therapy.  Christopher's regular PT is Amy, but yesterday he was doing evals.  He was in a great mood and willing to do attempt everything she asked.  His chattiness does make it difficult to keep him on task (more on that later).  At the very end of the one hour evaluation, you could see that he'd used up all his energy.  His face blanched, he laid back in the PT mat, tiny muscles shaking, and put his hands to his eyeballs so he wouldn't cry as he commented about "all the things he can't do."  Christopher can now walk short stretches on his own, or even stand unassisted for about 30 seconds, so he's been exuberantly telling us he's nearly ready to go home.  Being faced with everything that's week, one muscle group at a time, was hard....both physically and emotionally.  But it was only a 2-minute blip before he was wheeled in to the OT room.

OT Scott spent his eval time measuring grip strength and assigning Christopher small tasks with his hands that required precision, spatial awareness, pincer grasp, etc.  He got to sit in his wheelchair the whole time, so no muscle overload and his mood was perfect.  We did have to remind him several times not to play with the buckle before we got the message through, impulsivity is definitely at play (more on that later, too).

The last morning session was a Speech Language Processing session with Kristen.  He was able to do all her tasks perfectly in that session, so if short term memory blips still exist, they are very subtle.  He was also able to demonstrate good recall after listening to a short story and could parrot it back for her.

After the morning session was 2 hours' free time.  Despite describing some very uncomfortable symptoms in his head and a level 7 headache, Christopher refused oxycodone.  He really doesn't want to start puking again.  But he did accept Tylenol/reglan/Benedryl, which appear to help.  He didn't eat much at lunch, even though he said he was starving.  And then he curled up with his book until Child Life came in, saw him, and offered to rebuild his bed fort.  Christopher happily crawled inside and shut us out.  I'm so glad they appreciate his need to shut out external stimulation in his downtime.

After dinner last night, Christopher couldn't wait for the therapy center to reopen for evening free time.  He hasn't met a lot of kids here yet, since he couldn't leave his room until he got his wheelchair.      There are approximately 25 patients in the pediatric rehabilitation unit, ages 0-21.  His roommate is 16 and recovering from a car accident.  There are several babies, who are adorable as can be, and pretty much everyone in between.  As we had hoped, this seems to be really good for Christopher, as he is surrounded not just by other children, but by children who are also handling major medical hurdles.  It's normalizing, he's felt very isolated this summer because he doesn't know any other kids struggling with such huge obstacles--and the kids part is important.  He as told me several times that it's normal and expected for adults to have lived long enough for major illness, disease, or accident to occur.  But kids are supposed to be healthy.

Christopher woke up with a calm stomach this morning, but still has a very limited appetite.  I gave him Kefir, and he's also getting a lactobacillus regimen with his other meds, in order to rebuild his gut microbiome.  I think it's highly likely that between the IV antibiotics he received to prevent meningitis (definite good) and the many rounds of vomtiing and diarrhea, his gut is now fairly sterile.  We've had a minor hiccup this morning with his left foot.  His big toe woke up Tuesday morning and he was very excited to be able to wiggle it.  Yesterday, he regained the ability to wiggle the other four toes slightly.  Putting on his tennis shoes yesterday was no problem, although the left foot is still more sensitive to discomfort than the right and it took awhile to adjust the sock to his liking.  Today, he has much more wiggle in the toes and the ability to dorsiflex the foot into a 90* angle.  Unfortunately, now that his toes are less wooden, they are curling as he puts them into a shoe and can't uncurl them once the shoe is on.  PT Amy is also concerned that the limited dorsiflexion of his left foot is causing hyperextension of the left knee and could lead to damage.  So she is fitting him with an orthotic to wear outside of PT to prevent injury, although he'll work in therapy without it to strengthen the areas involved.

Today is another day of evals and tomorrow is the Steering Meeting where we hear the results of his evaluations from each team.  That is also where an initial discharge date will be proposed and where we'll get a checklist for each of the skills he needs to have onboard in order to go home.  The goal is for him to not need the wheelchair to navigate our house, but to be comfortable using it whenever goes outside or on errands while he continues his therapies on an outpatient basis.  Updates may start slowing down now that he is stable and in a routine at Kennedy Krieger, but I do intend to do a post on after his Steering Meeting.

The afternoon sessions included repeat sessions with PT and SLP. We also saw Natasha from Neuropsychology for the first time.  Where neurosurgeons work with what is physically wrong with the brain, Neuropsych is concerned with all its chemical and molecular pathways.  In her words, "We look at the chemicals the cells spit up during an injury and what effect that has on the brain."  Even though Christopher's night nurse send hospital PT had told me he is behaving exactly as one would expect in a traumatic brain injury scenario, this was the first, official diagnosis of TBI.  Basically, even though his AVM ruptured in a controlled setting in the OR, the AVM resection created enough swelling in the frontal lobe, that he was exhibiting many of the cognitive and emotional deficits of a stroke or other TBI in addition to the left side hemiparesis.  They spent a lot of time asking about Christopher pre-surgery, and even pre-Stroke Watch 2016.  They also asked lots of questions about his behaviors since surgery.  The fidgets in PICU, inability to distinguish time, anger rages, perseveration, inability to focus on a task for more than a few minutes, inability to understand why he was in the PICU and couldn't go home, all align with a Rancho level IV.  He now appears to be in a Rancho level VI, by my estimation (they're still in eval phase).  Everyone agrees that he has progressed rapidly in his cognitive recovery, and they think he will make at least a nearly complete recovery.....but it could take a year.  Because of the complexity of the brain, the behaviors affected are due not just to the areas affected by the AVM and its removal, but also the ones he had the most trouble controlling prior to Stroke Watch 2016.

Christopher's final session was with Behavioral Psychology.  Lara has been his primary liaison during the eval phase, but we are now moving into treatment with Rachel.  They primarily use active techniques and biofeedback to help Christopher develop coping strategies for getting through his therapies, which are difficult both physically and emotionally, and for handling the immensity of his condition and recovery.

Figure 1--Introductory materials on Traumatic Brain Injury, the Rancho scale, and the expected behaviors associated with each level on the scale.

For me, the impact of the first 36 hours at Kennedy Krieger has been huge.  I've been given names for behaviors I was seeing in the PICU, things I felt must logically be the result of the surgery and subsequent swelling of the brain. Unfortunately, the PICU day nurse mostly looked at me like I'd grown a third eye when I told her what I was observing, leaving me to think that Christopher was "just" dealing with the stress of waking up unable to walk.  Certainly, that plays into it.  But his initial behaviors and their progression are following a very defined sequence he has little control over.  As parents, friends, and family, we need to redirect his inappropriate behaviors towards acceptable alternatives, but without judgement or discipline.  Patience is critical.

I'll may do a post dedicated to Traumatic Brain Injury and Christopher's early progression through the Rancho Scale.  I spent a lot of time yesterday telling our social worker (yeah, we have one of those, too, to help guide us--mostly me, as primary caregiver--through this labyrinth), neuropyschs, behavioral psychs, and nurses that we should.have.been.warned.  I very specifically asked Dr. Tamargo at our pre-op authorization appointment what to expect beyond the left leg deficits they were anticipating.  I even called out vision problems, attention deficits, and memory gaps because I had read in my research that they are common post-craniotomy.  Tamargo waved me off and told me that since they weren't operating in those regions of the brain, we wouldn't see any of those symptoms.  I also sent an email to Drs. Ahn, Groves, and PA Stephanie asking for details on what to expect during recovery so that I could adequately arrange for family help during his recovery with our other two children.  That was the first time we were told that in very rare circumstances, the hemiparesis could be severe enough to warrant inpatient rehabilitation.  Nobody ever said that cognition deficits were possible, let alone expected.  I told them I'd have gladly paid an extra co-pay during our pre-op authorization visit to meet with Neurospych, and that it really needs to be part of the standard practice.  Apparently, it is with every kid undergoing brain surgery for epilepsy, but the other neurosurgeons aren't yet on board with this approach.  Even if they didn't think it likely Christopher's brain would react as though he'd actually had a TBI, the second he developed near-total left side hemiparesis, I feel they should have known the cognitive deficits were coming, and called in Neurospych for a consult.  I should never have had to suffer through his anger rages, time dilation, memory gaps, and perseveration without knowing it was a NORMAL process for a patient with an AVM in the frontoparietal lobe (fancy talk for straddling both his frontal and parietal lobes).  The frontal lobe is responsible for executive functions like emotional regulation and impulse control.  The parietal lobe handles sensation and emotion.  He has edema in both.  His first CT scan showed residual blood from surgery was sitting on frontal sulci as well as in the AVM cavity, but the neurosurgeons just said, "We see a little blood leftover from surgery, which we expected."  They didn't tell me that when there's blood in the frontal lobe, TBI symptoms will present.  The good news is that he has progressed through the Rancho scale so rapidly, that it won't really play a role in his NP therapies.  The cognitive deficits he has are subtle, more so because of his incredible intelligence, and both NP and SLP know that they are going to have to go way beyond the baseline tests to find and treat him at this point.  The hope is that his recovery will be so complete, and the remaining deficits so subtle, that it will not affect his ability to function in the larger world.

So, that is the current status for our life in the fish bowl.  Everyone here at Kennedy Krieger is, indeed, amazing, its reputation is deserved.  Having kids around has also been really good food.  But the nurses' station dings with every call button pushed, where Johns Hopkins Hospital proper only sends call button alerts to staff phones.  Christopher's roommate is in a lot of pain and therefore requires lots of attention at night.  Between the extra staff visitors and the call button alerts, I'm not sure I slept much at all Tuesday night.  Last night, I took two Benadryl and medicine to calm my gut.  I also shut the door completely, which staff kept closed when they weren't in the room.  That helped, I got a fairly decent night's sleep.  Luckily, Christopher sleeps through all of it and has woken in a great mood.  He is up, dressed, teeth brushed, and reading while he awaits breakfast.

August 23, 2016:  We had a small blip this morning, because Christopher was still so nauseous from last night's vomitpalooza that he wasn't interested in food.  His pain management team had told us he had to eat and drink to move to Kennedy Krieger today. Luckily, they were happy he just kept an apple and some water down.  And Zofran, drug of wonders, perked him up quite a bit.  Scott's parents drove up with Alexander and Sabrina so they could visit him a bit while we were awaiting discharge.  

Our favorite neurosurgery PA, Stephanie, came to talk to us about his progress thus far and the plan for the future.  The Chiari decompression is still on the table, but because the next three months are critical for getting Christopher back to his baseline prior to hemiparesis, we definitely won't be doing the next surgery during that time period.  He'll have a follow-up in a month with both Drs. Tamargo and Ahn to monitor his neurosurgical progress, and an MRI at 3 months post-op to visualize his brain.  That is also when Dr. Groves wanted us to check in with her for a Chiari followup.  In the meantime, it is up to Christopher to work as hard as he can in rehab during his sessions, and to rest when he's not.

I packed up the room and then....it was time for the IV to come out because his transport team had arrived!  You can use the tunnel system to walk directly from Bloomberg Tower to  Kennedy Krieger, and they apparently did that until last year.  But someone decided it was better to transport patients via ambulance.  So here you go:

 We are now safely ensconced in his new room, #313.  The hospitalist pediatrician, his Physical Medicine and Rehabilitation Therapy (PMRT) physician, his nurse for today, his physical therapist (PT), the medical equipment specialist, the financial rep, his social worker, the child life specialist, a graduate student, the nutrition tech, and his nurse technician have all come to visit us since our arrival.  Whew.  And that doesn't include everybody.  He has been all smiles and incredibly friendly with everyone.  I'm not sure he ever stopped talking.  I'm not sure if it's his general "I'm in a hospital, they're going to do something to fix me" euphoria, or the swelling on his brain, or....Christopher is not generally this chatty, especially with new people!

Trailing the main herd, we saw the speech therapist, as well.  New word for the day: perseveration.  "In psychology and psychiatry, perseveration is the repetition of a particular response, such as a word, phrase, or gesture, despite the absence or cessation of a stimulus, usually caused by brain injury or other organic disorder."--Wikipedia

It hasn't happened in a few days, so hopefully it was just a short-term effect, but the speech therapist just named this behavior for me.  Christopher speaks so well, I didn't think he'd need speech therapy.  But she will also diagnose and treat perseveration, short term memory lapses, attention span deficits, listening.....These are precisely the deficits that, combined with Dekadron rage, made PICU loads of fun.  He'd ask a question, I'd answer, he'd repeat it exactly, I'd rephrase, he'd repeat, I'd try to redirect, he'd repeat.....it was weird and frustrating and scary all at the same time.

This is his Escape from Johns Hopkins Hospital Face

And now he's sitting, reading comfortably.  He finished House of Hades, figured out the house wifi to download Blood of Olympus, and is trucking towards the finish of the Percy Jackson saga.

Khabarovsk Way-Station, Pediatric General Floor Recovery

Playing Color Code.  Notice Heather decided he needed a ginormous orca.

August 22, 2016, 10:00pm:  It's been a busy day.  And since I'm posting this update from the Peds General Floor post, not at the beginning of a new Rehab post, we are indeed still in Bloomberg 10 South.  Not sure exactly what happened, but somehow nobody notified Kennedy Krieger about Christopher or got insurance authorization Friday.  Nobody's claiming responsibility on that one, but I know the evaluation was done by Physical Medicine & Rehabilitation Therapy last Thursday and Neurosurgery had signed off on it by 8am Friday.  So I had to spend time today meeting with the Case Manager at Hopkins and the Director of KKI, which included a tour of the facility and its operations.  

Christopher still astounds everyone with his progress and had additional PT this morning.  That had him walk one lap around the entire ward.  He can walk a straight line with support fairly well, but loses his balance on turns.  In straight halls, that's not too bad, but in a room with furniture to negotiate, he struggles.  We attempted to play Jenga for his left hand fine motor skill practice today, but he kept toppling the tower, so we played pick-up blocks instead.

Behavioral Psych also came today.  They are involved to help him negotiate the emotional shock of waking up with hemiparesis, but also to help him regain emotional regulation and executive function as his front lobe heals from the edema of surgery. They had him work on breathing exercises with their biofeedback app.  He made the music play his first attempt, which is shocked them all.  So, Christopher has excellent breath/mind control, he just needs help applying it when stressed.  They'll work on that.

I'm not sure whether he actually ate anything today.  Certainly, everything he drank before 8pm came back up.  Lots of projectile vomiting today.  We have officially determined that oxycodone is not Christopher's friend.  I was able to dribble ~100mL Pedialyte into him just before bedtime.  So for now, he gets Tylenol only for regular pain control and Reglan/Benedryl for rescue.  

Child Life totally came through for us today, though, and got Christopher an appointment with Hollister, the golden retriever therapy dog visiting today.  There was a slight misstep when his owner asked what sports Christopher likes to play (we don't really do ball sports!), until Christopher said he's a swimmer.  Turns out, the handler is a triathlete and Iron Man, so they got to talk about swimming, cycling, and running.  We've now decided we need to make a bucket list of the Top 20 Things Christopher wants to try when he's an athlete again.

So.  Today hasn't been bloody awful, and it's been rather productive, it's just not been particularly enjoyable.  I've been incredibly emotional today.  It just shouldn't be so hard for to do simple things like go the bathroom or play Jenga.  He's cried a lot today, too.  Not sure whether or not we still believe in the stages of grief, but he's definitely done with anger and denial and moved on to tears.

11:00pm:  Christopher didn't have a single rage today.  Or anxiety attack.  When he's in pain, he gives us an honest answer.  He isn't in love with the idea of rehab, but he isn't arguing its necessity or refusing to go.  Once we were past the migraine, he got up and had a blast making Star Wars paper craft planes with Bryson.  Then we made total fools of ourselves launching them off the mezzanine along with paratroopers.  After Scott and the Pitsenbargers left for home, we did his PT homework assignments and then he READ House of Hades for 2 hours.  I enlarged the typeset a good bit for him, but still.

1:20pm:  Christopher's head CT is perfect.  Well, as perfect as a 4 day post-craniotomy/AVM resection with Chiari I malformation can be.  No brain bleed.  Just the migraine from the other side.  Christopher has a new IV in the right arm, but it's not his hand, so it isn't as aggravating or difficult to work around.  Into the IV went Zofran and fluids to stop the nausea.  That seems to have kicked in. He will be getting pain meds every 4 hours indefinitely because it is still too soon post-op for him to get actual migraine rescue drugs.  The hope is that while we know we aren't stopping the migraine, he just won't care about it.  He is also getting Reglan and Benadryl through the IV, which is close to being a migraine cocktail, it's just missing the NSAID (think Motrin).  Neurosurgery says that we definitely need to rethink his migraine prevention protocol, since we were noticing 2 weeks ago that he was getting breakthrough migraines, but didn't take him to his headache specialist because it was too close to surgery to change the protocol.  We are now too soon post-op to change things up.....grrrr.  

But we do have a plan.  

And as much as migraines suck, they are not a reason to keep him on the Peds floor, so he will still likely be transferred to Kennedy Krieger to begin rehab tomorrow.  They have a Pain Management team there, so they will definitely become part of his care team in order to make sure that migraines and Chiari headaches do not hamper resolution of his left side hemiparesis (official diagnosis).

Christopher's PT came again today, and insisted he get up and walk, migraine and all.  She also gave him exercises for homework.  But she also gave us some more information:

1) He's likely to be at Kennedy Krieger for at least 3 weeks.

2) Extreme anger is really common in AVM resection patients when it is near the frontal lobe.  The surgeons don't drain all the blood during surgery, and the tiny pool they left (and which was still in place in Friday's CT scan) can affect executive functioning until it resorbs.  In other words, he has no filter for anger or tact.  The Decadron he was receiving, while a truly excellent option for limiting the swelling in his brain post-op, is also notorious for triggering rages.  Not a great combination.

3) Pet therapy is often utilized at KKI, and since Christopher needs fuzzy animals like he needs oxygen, that will definitely be part of his plan.

4) KKI has a therapy pool, so they will try to incorporate water therapy as soon as his incision site is cleared since Christopher loves the water.

Now that the meds have taken effect, Christopher is pretty chipper again.  He just finished several rounds of Color Code with Bryson and Heather.  Then they had a discussion of fluffy animals and how "When I was little, I couldn't sleep without holding a stuffed animal, but now that I'm older, holding a vibrating cat is ten better than a stuffed animal."  Scott and Heather took that to very non-G rated places.  Now they're doing Mad Libs.  Which has led to the discovery that Christopher can read small print again!!!  

11:02am:  Head CT done.  He's vomiting now.  Still too close to surgery for a migraine cocktail.  IV line going back in.  Waiting to choose which IV drugs to administer based on whether they diagnose it as migraine or brain bleed.

August 21, 2016, 8:30am:  Another beautiful, restful night for Christopher.  He woke up at 7:00 to pee, change his pajamas, and then surgery-site headache/Chiari pain exploded into a hellacious migraine.  Oxycodone and Tylenol were administered right away, 90 minutes later, no effect.  Massive pressure in the right eye, vision blurry, doubles if he tries to focus.  Neurosurgeons have rounded and are checking with Ahn and Tamargo to see if they want a CT/MRI scan, and whether we can try an IV migraine cocktail.  They are definitely on it since he hasn't really complained much at all about headache pain prior to this, and never an hour-post meds.

Look, no more dressings!

August 20, 2016:  Christopher was right, PICU was stressing him out.  He slept great all night and nearly through his 4 hour vitals checks.  His blood pressure readings were all good, too.  Once he woke up, though, his mood was still pretty volatile.  I need to start a list of all the things doctors should warn you about before brain surgery:

1) 95% of patients get constipated from the anesthesia and painkillers, so you'll be one of them even if you've never been constipated before--seriously, why don't we do prophylactic meds for this?

2) As the nerves in the brain regenerate, pain and temperature will be ultra-sensitive even as decreased sensory perception persist--information I could have used before he started crying in pain from the left arm IV drips at the same time the right arm didn't care, or screaming every time the arm gets bumped, or shivering under 4 blankets because the left side was bitterly cold in a 75* room.

3) Decadron, the anti-inflammatory used to control brain swelling, brings on massive Roid Rage.

4) The number of needle marks in the body post-op is much greater than the number of lines put in.  The kid seriously looks like a heroin addict.
5) You need to be able to lift your child's weight in a dead lift without throwing out your back.

Every 9yo boy should have a view of the Life Flight helipad out their hospital window.

There are several other things the doctors forgot to mention, but that I found in my research.  The short term memory gaps, vision loss, and attention span deficit all fell into this category.

We should now be past Item 1, Item 2 is beginning to subside, Number 3 finished tonight, the bruising from the fourth item is turning pretty colors, and I was only mildly sore helping Christopher move because of Item the Fifth.  I am sure that he will still have a good deal of emotional volatility even after the steroid titrates out of his system over the next few days, but I'm hopeful the irrational rages will cease.  The attention span deficit is clearing.  Instead of the 3 minutes to follow a single thread he had on Day 1, the 10 minutes he had on Day 2, he can now watch several episodes of Avatar: The Last Airbender in a row.  We'll try listening to audiobooks again tomorrow, I hope.

Pain is better today than yesterday, but still requires careful round the clock dosing.  That, they told us to expect.

Physical therapy is still not his favorite activity, but he is making rapid improvement in his ability to place the left foot each step provided he has full support of his torso.  The effort of a 6-yard walk no longer makes him want to vomit and he can sit up straight for a few minutes.  The left arm is still very weak and he has very limited ability to complete left hand fine motor tasks (e.g. tearing wrapping paper was his PT assignment today).  The anger is actually serving him really well in that respect.  He's so motivated to go home that he keeps pushing himself to walk as much as possible instead of use the wheelchair.  I actually read an article last week about the benefits of a negative outlook, as luck would have it.  The anxiety he had before surgery led him to ask (and to search out answers) for nearly every aspect of his procedure, so he was very prepared going in.  And his neurosurgeons continue to be amazed at how quickly he is recovering from what was near total motor and sensory loss on the left side, so our sample size of one clearly validates this theory!

Working on kicking the leg way out in front with each step instead of shuffling.

Dr. Tamargo visited late afternoon today and told us he no longer needs to be on the Peds floor.  Unfortunately, the Kennedy Krieger Institute cannot take new patients on the weekend and he cannot be discharged home in his current condition.  So we'll continue PT/OT from 10 South tomorrow and await transfer to KKI Monday.  He has been given pretty free rein of the hospital, though, and since Heather and Bryson drove from WV to visit, we plan on folding Star Wars paper airplanes and launching them from the mezzanine into the main entrance of Bloomburg Tower tomorrow morning.  Today we explored the playroom and ate dinner in the courtyard abutting the original hospital building to escape the drudgery of a patient room.

Seeing kids has been huge for Christopher, first his brother yesterday and now Bryson this weekend.  These photos are of our "escape" from 10 South to the courtyard abutting the original hospital building for an early dinner/late nap.

Khabarovsk Way-Station; PICU Recovery

Friday, August 19, 2016; 9:00pm:  Today was an incredibly emotional day.  Christopher has some very minor blips in his short term memory.  So he was absolutely certain we hadn't done his CT and berated us sharply for leaving before it was done.  Later, I told him I was leaving to talk to one of his care team members.  He completely forgot, and a nurse came to get me because his pulse and bp had skyrocketed from his rage at my absence.  He slept between all his neuro exams until 10:30, and then spent the rest of the day jumping from one anxiety attack to the next.  Finally, Dr. Ahn rescued him by deciding PICU was preventing solid sleep and comfort free from tubes and cords and released his bp constrictions.  By dinner time, Christopher was ensconced in 10 South on the regular peds floor.

He is much stronger today, and his short walks to the bathroom are already much stronger than his first walk this morning.  But it is all just.so.very.hard.  For me as much as for him.  For tonight, we will try for a semi-solid night's sleep.

Friday, August 19, 2016; 1:00pm:  The train is stopped indefinitely.  Christopher was maintaining his MAP 75 level, but just as they were ready to turn off nicardipine, MAPs went to 85.  He is on a much lower dose than the max he's been on, but the expectation is that he has at last another night in the PICU.  The expectation is that he'll then go to the regular floor until Monday.  Christopher's vision is still blurry up close and doubles if he focuses to the left.  His visual tracking is slow, as is his ability to focus on a conversation.  Tamargo feels this is an artifact of brain swelling and it will resolve.  Rehab medicine anticipates 3-4 months for most of Christopher's gains in the left side recovery, but full recovery will take 6-12 months.  Because he only has one IV now, all non bp meds are being given by mouth.

Physical Therapy and Occupational Therapy have both come to work with Christopher today.  Walking 40 feet was the equivalent of running a marathon for him today, but he did do it.  He even got a bonus 12 feet using the restroom after his CT scan.  The physical therapist told him that both Physical Medicine & Rehabilitation Therapy and Neurosurgery have recommended him for inpatient rehab at the KKI facility on the Johns Hopkins campus.  To say he isn't happy about that is an understatement.  I do not yet have a timeline for how long they expect him to remain there before he can come home and continue physical therapy as an outpatient.  He will continue doing PT/OT here in Bloomburg Tower until he transfers to KKI.  Occupational Therapy prescribed a boot to help him flex the left foot for walking. They will also work with him to improve his vision and regain precise control of his left arm and leg.

Physical Therapy doing an initial assessment before transferring all his IVs and monitors to a portable stand to take his first walk.

Friday, August 19, 2016; 5:30am:  We topped off his fentanyl at 2am because he was thrashing and said he had a headache again.  All was well until 4am, when he tried to pull himself up and across the bed to pee on his own.  I awoke to him nearly slamming his crani site into the bed rail, and jumped up to help him onto the bedside commode.  We thought everything was going great and I was really pleased by the stability of his torso until I saw blood dripping from his hand onto the floor.  IV line pulled....who designs their length, anyway?!  Mild panic ensued as I called for help and pushed the nurse call button and several nurses and techs rushed in to help.  He's all cleaned up, and back asleep now, and down one IV line since it was probably coming out this morning and his MAPs maintained at 65 the whole time he was offline the esmalol and nicardipine.

So.  A whole beautiful night's sleep, increased ability to hold his head and torso up for a few minutes, and he got rid of one dreaded IV.  PT/OT never made it yesterday, but the rehab physician team did complete their eval and put in orders for inpatient PT/OT to begin today.

Overnight Update:  Sleep!!  So far he's logged 5 hours' sleep after level 10 pain at 9pm.  He was restless and was eye open/sleep talking midnight-1am, but he's been still for awhile.  Fingers crossed he stays asleep for the rest of the night.  MAPs stable, but not low enough to start titration off bp meds.

Thursday, August 18, 2016:  Christopher is having a really rough time in PICU.  Last night, the fentanyl kept him so chatty he only slept about 2 hours.  I suspect the Decadron steroid to control swelling is also to blame.  His nurse and I were pretty busy trying to keep him calm.  Today, he is really frustrated at the near total loss of use of his left leg.  Sensation has returned, and he has some limited ability to lift or bend the leg, but he still can't control the ankle, foot, or toes.  PT/OT should come today to start teaching him/us how to function with a listless leg.  The arm is still weak, but has full mobility and control.  No fentanyl because he says he isn't in pain, but still can't sleep for more than 45-60 minute stretches.  He has trouble focusing his eyes to read or watch a movie, and can't concentrate to listen to an audiobook, which has led to several anxiety attacks.  This is all very normal post-craniotomy, and we knew to expect it, but it's very hard on a 9 year old.  His MAPs are being maintained at 70, but it takes two different blood pressure meds to do it.  He is therefore definitely staying a second day in PICU before he can transfer to the regular floor.  Tomorrow they will do a CAT scan to monitor his brain.

The neurosurgeons are still confident that the left side deficits are temporary.  The timeline for full recovery is indeterminate, though.  It could be 72 hours, or it could be considerably longer.  The rehabilitation physician came and evaluated him this afternoon.  They are definitely recommending Physical Therapy/Occupational Therapy, but we don't yet know details.  As it stands, he cannot navigate daily life, even sitting up straight is more than he can handle just now.  Rehab is definitely going to have him begin PT/OT while he's still here at Johns Hopkins, hopefully as early as this afternoon.

Khabarovsk; Craniotomy and AVM Resection

8:29pm  When we first got to PICU around 4:150pm, all the physicians and nurses were delighted to tell us how smart and funny he is.  Christopher's speech was slurred, and he was telling everyone everything about everything.  But then his mean arterial pulse (MAP) got higher than they wanted, he kept going tachycardic, and he was really agitated.  A dose of pain meds calmed him down and he went to sleep, so Scott and I rushed to grab dinner in the food court.  Unfortunately, he was agitated again by the time we got back, and we found the nurses had just topped his fentanyl off with Tylenol. They're still titrating his nicardipine upwards, as his MAP is still hovering around 75.  As long as he's calm, he's no longer tachycardic, and watching Home seems to be a good distraction right now.  He was having intermittent double vision, but that might be clearing up.  

Initially, in Mr. Charming Phase, Christopher was ecstatic about all things and how amazing it was to be AVM free.  Now, he hates hospitals.  But where before he was really upset about his sore throat, now he's complaining about how much his head hurts.  He often has an anxiety attack several hours before a major spike in his headache, so I suspect that was the source of the earlier agitation.  A nurse has pretty much been in here the whole time adjusting his IV bags and meds and checking his stats.  Hopefully that will change soon.

As predicted, the left arm and leg sensation and motor control deteriorated.  His arm is pretty weak, but he can direct its movement and wiggle all his fingers.  His left leg went completely numb for awhile, but his foot sensation is back.  He cannot move his toes, but if he really concentrates, he can lift the leg a bit.  He is now aware that it is numb and unresponsive, and is definitely disturbed by that.  But since the leg has improved from its 4pm status, the neurosurgeons feel confident it is all temporary.  In general, they're quite pleased with his status, but did go ahead and prescribe Cepra as a prophylactic against seizures, which is fairly standard in neurosurgery patients.

The incision site is larger than we expected, and looks a bit like a tonsure, but so far, he has only mild swelling in his scalp and face.

3:29pm  He's out.  He's awake.  He's calm and responding well.  Drs. Tamargo and Ahn just came to visit us.  The AVM is gone.  The walls were so thin, they could see the blood flowing through the them.  So, it was about to rupture, definitely within the next few years, and it did begin leaking as they pulled out the nidus.  The left side is responding well, he can move his fingers and even his toes, but he definitely has weakness in the left leg.  They warned us that as swelling sets in, it will get worse before it gets better, but they are hopeful it will be temporary and he'll regain full use.  Christopher did need blood transfusions, but nothing "out of the ordinary".  PICU should allow us back to see him within 45 minutes.

Stroke Watch 2016 is over! Next phase, AVM recovery....because I need this kiddo back. The one that ran a 10k on the Great Wall of China last year. The one who said, "But Mommy, I can't just walk. I have to run."

1:17pm  Supposedly, the OR called Reception at 10:18am to say they'd started the craniotomy.  Reception says not.  No idea what happened there, but I've been a ball of nerves trying to figure out why a one hour angiogram had turned into four.  When we hadn't heard anything by noon, Reception called the OR for us, and then said they were still doing the angiogram.  Just now, Reception told us things were going well, but had no idea whether they'd started the craniotomy or not.  I started shaking, so she called the OR and let me talk to the nurse.  Craniotomy started at 10:18am, they think they are halfway through, and they currently have interventional neuroradiology in again to check the status of the AVM.

Official AVM Ejection Photo.  And modeling of the Johns Hopkins University Hospital Garage Charging Spots

10:00am  We made it to Surgery Day.  In theory, Stroke Watch 2016 is now behind us.  Christopher was amazing this morning.  Mr. Charming himself, the pre-op nurse was convinced a little man was hiding in his young body because he totally took charge of answering all the questions about his medicines, food/liquid intake, everything.  He had to explain what Stroopwafel is, since that was his 10pm snack last night.  Scott is here with us today, so we played Mad Scientist Mad Libs while we waited. He is definitely concerned about having not just one, but two IV lines, and also the arterial line.  Christopher told me last night he’s not scared of the surgery per se, just what happens after he wakes up.

Me, too. 

Mad Scientist Mad Libs

We met his anesthesiologist and anesthesiology fellow, his operating room nurse, and saw both Dr. Tamargo and Dr. Ahn before they took him back to the OR.  I pointed out the stereoscopes, the fellow took charge of the gas that put him to sleep, and then he was out.  No crying, no balking, very calm.

His OR nurse and anesthesiology fellow beginning the prep work after he was out.

It took them right at an hour to get him prepped for the pre-op angiogram, they should be nearly done with the imaging now.  And then the neurosurgeons will have the information they need to decide exactly where to place the hole in his head and the removal of his arteriovenous malformation will commence.

I expect a call soon letting us know that they are done with the angiogram and beginning the craniotomy.  At that point, we may look into donating blood, as Dr. Tamargo told us he's quite likely to need blood products today.  AVMs like to bleed.

For now, we wait.