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.