Day 25 (Sep 19)

Bottom line: We've finally entered the phase where not much new is happening day-to-day.  Tobias continues to make progress.  Today he managed to stay alert for 15 - 20 minutes and gave multiple thumbs-up gestures.  Katja didn't feel well today so I was on my own with Tobias, but when he was alert we Facetimed with his mom and he seemed to move his mouth when she asked him for a smile.

Detail:

So... full disclosure...  I was trying to add the photos of Tobias yesterday and somehow I managed to delete my entire post.  It wasn't the worst thing that has happened to me in the last say month or so, but it sufficiently deflated my enthusiasm that I opted for the quick post that you saw yesterday.  Today is a new day, however, and the sun has come up again creating a beautiful fall day so with this new energy I'm going to give you a few points that were covered in the tragic birthday post casualty.

Tobias' heart rate has been in the 80s for much of the past several days, which is a good sign that his body has moved past the storming.  He is still receiving storming medication, but the frequency and dosages have been reduced.  Some of the medications have been completely eliminated from his diet of chemicals.  I haven't seen his HR above the low 100s, which is a far cry from the storming days of 150 - 180 beats per minute.  He is still sweating and posturing, but more mildly than before.  His left arm is still very rigid most of the day.   The doctors believe this is not a symptom of storming, but rather that the part of his brain controlling his left arm may have been damaged and has resulted in the spasticity.  For many patients the spasticity naturally dissipates over time.  I still train his arm several times a day, but it is often quite slow progress because his muscles are conspiring to keep his arm in one spot.  He's been motionless for over three weeks, but his muscle strength is still formidable.  Before his injury he was doing three sets of pullups with a 45-pound weight hanging from his waist.  His biceps and triceps went through similar training which makes my job to coax his unwilling arm through its normal range of movement a thankless challenge.  I go slowly and win my way inch-by-inch through the exercise.  Unfortunately my best efforts won't help him work through the spasticity, but it will help move the lactic acid out of his muscle tissue that must be building up through the many hours of strained contractions and increase his level of comfort.  Eventually, if the spasticity doesn't resolve itself, there are medications that can help him function normally.  Botox is actually a common treatment to help with spasticity.

His oxygen level was in the low 90's yesterday, which had us concerned until the nurse told us that he was no longer receiving supplemental oxygen.  This is an important step to getting rid of the trache and breathing normally again.  I'm not sure when that process will happen, but we were told that he first has to show that he can function with the naturally occurring level of oxygen.  Check!

The chief neurosurgeon dropped in yesterday to wish Tobias a happy birthday.  He wanted to catch up with us as well to answer any questions and tell us that he thinks Tobias is ready for the LTAC.  He suggested that Tobias move to the LTAC on Tuesday.  We mentioned the doctor who visited Tobias from the rehab hospital and asked if his transfer there is still an option.  He didn't know anything about the rehab hospital so we'll have to connect with the doctors there on Monday.

Today the nurse was showing a student nurse how to administer the medicine for Tobias so I got to hear the names of all of them.  I was surprised that oxycodone wasn't on the list and that one of the medicines that had been discontinued two-plus weeks ago is now again in the rotation.  I asked the nurse about the changes and she confirmed that they were moving from stronger pain killers to more gentle working replacements.

Tobias had another PT session today.  The PT brought a PT student with him as well so Tobias had an extra set of hands helping him get flexible.  They set Tobias on the side of his bed with his feet on the floor.  It was a carefully orchestrated maneuver with lots of checks and double checks to make sure that his head was always protected and that he didn't slip out onto the floor.  Tobias didn't manage the exercise very well, unfortunately.  Normally when he is sat up, his eyes open and he is quite alert.  He didn't respond in the same way today and he couldn't hold up his head or balance his torso well.  The PT held him in place for several minutes so Tobias would have to exercise his core and then both of the PTs reversed the process to put Tobias back down comfortably in his bed.

Tobias developed sores on his ear and neck where he has been favoring his weight.  Since the initial injury, he has been prone to lying on his left ear and over time the weight of his head has caused a lesion halfway between the top and bottom of his ear right where the edge curls.  It looks like a brown spot where the fruit has become too ripe.  The spot on his neck is tender because the strap holding his trache in place pinches his skin when his head is tilted sharp left.  The solution to both sores was to keep his head from lying over on his left.  The nurses brought me a circular, soft foam pad two inches thick and six inches in diameter.  It has a hole the size of his ear in the middle and works well to distribute the weight of his head across the pad and protect his ear.  I rolled up a memory foam pillow and held it rolled up by wrapping my belt around it.  The pillow is the right size to fit between the side of his head and the side of the bed so that by putting the donut over his ear, the pillow keeps his head centered.  The PT put a towel on his right side to protect his head from rolling to the right, but I've never seen Tobias roll to the right since the injury.  The brain must feel the vulnerable spot where his cranium is missing and not roll his head to that side.  So far the dad-inspired head brace has worked great and Tobias' ear has been kept away from any pressure.

The next steps for Tobias' recovery are to move to breathing through his nose again and to stay alert for longer periods of time.  Eventually the edema (swelling) in his brain will decrease enough that his cranium can be reattached.  The bone is currently sitting in a freezer somewhere in the hospital.

The transition to breathe through his nose again is a multistep process.  The first step is to deflate the balloon in his throat that holds the trache in place.  This was done yesterday.  The balloon held the trache secure and also made it impossible for air from his lungs to exit through his nose.  Most of his expelled air exits through the trache still, but some air also leaves through his nostrils.  At some point the trache tube will be capped with a valve that allows Tobias to breathe in through the trache, but redirects exhaled air to leave through his nose.  As his body reconditions to breathing out his nose, he'll spend more and more time with the valve in place.  Eventually the trache will get capped and Tobias will breathe in and out through his nose.  The trache tube that inserts into his neck will be replaced with a smaller and smaller tube to allow the hole in his neck to close.  Eventually Tobias will reach a condition where the tube is the smallest size and is capped.  Once he shows that he is fine breathing under those conditions, the tube will be removed and his stoma (hole in the neck) will close.

Now that his storming is minimal to non-existent, I'm hoping that they will soon re-administer the brain stimulants.  These seemed to have a good effect on his responsiveness, but they triggered the worst of the storming.  I'm waiting to meet with a neurosurgeon to find out what their plan for Tobias is.  They  will decide when to add the brain stimulants to his chemical cocktail and when to start the trache transition process.

Yesterday when the main neurosurgeon visited Tobias, he noted that Tobias' swelling reduction is ahead of what he had expected.  Theoretically he could put the bone in already, but it will help Tobias to wait longer.  He floated a possible scenario that was nice to hear since the surgeons to date have been very vague and non-committal in the prognostications.  He thinks that Tobias will be in an LTAC for 3 - 4 weeks, but then he'll be ready to have his bone reattached and possibly go to straight to the rehab hospital after the surgery.  This means that the doctor is estimating that Tobias will be alert enough to actively engage for three hours a day in rehab.  That seems like a long putt from here, but everyday Tobias shows a new sign that he is improving.  Today he was alert for 15 - 20 minutes in the morning.  Up to now he drifts out very quickly and is only alert for a few seconds.  We may get a thumb gesture, but then he's gone off again somewhere.  This morning when Tobias' eyes were open I called Katja on the phone and propped up the phone so that Tobias could see and hear his mom.  Tobias' eyes stayed open and alert during the whole call.  He didn't locked in on me or the phone as far as I could tell, but he moved his thumb multiple times and had a clear look in his eye.  This session lasted for 15 minutes at least and prior to this he hadn't stayed alert for more than a few seconds with the exception of the one time where he moved his thumb three times in a row.  Every day he takes a step closer to coming back to us.

Hope over fear

Emily, Chris and Eloise came to visit Tobias for the last hour today.  Eloise doesn't meet the 18-year-old minimum age so I got to spend some time with her while her mom and dad visited Uncle Tobias.  This is the typical facial expression that I get when she doesn't get to do what she wants.  Here she wanted to walk in the dirt with her socks.  We're practicing unhappy resting face.