Day 35 (Sep 29)

Bottom line: Tobias had a calm day.  He hasn't stormed today, but he hasn't woken up either.  The speech therapist capped his trache today and Tobias has been breathing through his nose without any help for several hours.  His muscles have been more pliable than previous days as well.  The rehab doctor is lowering some of the medication that contributes to his drowsiness, but must move in steps so that Tobias doesn't experience any withdrawal shocks.

Look mom.  No breathing tube.

Tobias is breathing completely unassisted.

Detail:

Tobias' storming episodes are in a waning phase apparently.  He is storming once every 12 hours.  His heart rate hasn't reached higher than 135, but he has been sweating and posturing.  His blood pressure reached 160 yesterday, but came down when the storming passed.  This is likely a result of the waxing and waning nature of brain recovery, but could also be a good sign that he is trending in a favorable direction.  The doctor changed the medication targeting his muscle rigidity yesterday from bromocriptine to gabapentin.  Tobias was receiving the highest dose of bromocriptine that the doctor was comfortable with, but his arms were still rigid for much of the day.  The new medication appears to be working better.  Tobias' arms are less stiff today.  It's difficult to know the true impact of any given step because it is difficult to change only one variable at a time and the waxing and waning of the recovery creates a dynamic that can't be discretely accounted for.  The doctors know the general idea of what impact each change should have, but it's a "best guess" world that we live in.

We don't know what is causing it, but Tobias has been sleeping resolutely for over a day.  The PT and OT had a joint session with him this morning, but, just like yesterday, they were unable to get him to stir.  The doctor swapped out his original trache for a smaller diameter trache yesterday, which should have a positive effect on his ability to breathe through his nose and mouth.  The original trache filled up his windpipe and included additional width in the shape of a inflatable cuff (balloon) that was originally used to keep the trache in  place.  Tobias didn't need the cuff so it was deflated, however even uninflated it was taken up space and inhibiting the passage of air in his windpipe.  The new trache is smaller and has no balloon.  The speech therapist will test him again today to see if he can breathe through his nose.  The test should go better since there is more space around the trache tube for air to pass.

The trache is comprised of a two pieces.  There is an outer tube, called the outer cannula, and an inner tube, called the inner cannula.  The outer cannula is shaped like an L with a large lip around the short side of the L.  The longer leg of the outer cannula is about two inches long and is inserted into the stoma (hole in the throat).  Because the tube is shaped like an L, the longer leg extends down into the windpipe and the lip on the shorter end rests against the stoma, keeping the trache from falling inside.  The lip extends out flat on the neck by an inch at the sides and half an inch at the top and bottom.  A strap attaches to the left side, wraps around the back of the neck and connects to the right side of the trache lip.  The strap is tightened to hold the trache in place and gauze bandages are placed between the strap and neck to protect from chafing.  The inner cannula has the same L shape but is small enough to fit inside the outer cannula.  The inner cannula snaps into place to keep it from falling inside and to secure it from flying violently across the room when the patient coughs.  The inner cannula is replaced every day to keep it from clogging up with mucous.  The doctor let me watch the procedure to exchange the original trache (size 6) with the smaller trache (size 4).  The doctor and respiratory therapist made the switch right at Tobias' bedside.  The nurse gave Tobias is shot of morphine and the T-piece was removed, the strap was unhooked and the trache was pulled out of Tobias' neck.  Before the procedure started, the doctor removed the smaller trache from its packaging and placed the outer cannula inside a foil packet containing a sterilizing agent.  When the trache was pulled out by the respiratory therapist, the doctor quickly plugged the hole ringed with raw flesh that was only momentarily visible with the new trache. I think the skin must have healed onto the trache and when it was removed the bond was torn open again.  There was a little blood, but the procedure was a success with no complications.

Fast forward one hour... the breathing test went better then expected.  Tobias' higher level brain functions aren't coming online quickly, but the lower level functions keep surprising the folks working with him.  The speech therapist tried a speaking valve test with Tobias three times before today and Tobias performed poorly each time.  The speaking valve allows the patient to breathe in through trache, but the exhalation must exit through the nose or mouth.  The ST told us that sometimes the patients' windpipes are blocked with the original sized trache, but they breathe fine with a smaller sized trache.  I was skeptical because it didn't make sense to me that Tobias' entire windpipe would be packed tightly with the trache tube.  I rationalized that even a small gap should have been sufficient for Tobias to breathe past the tube and out through his nose.  I reasoned that the problem lies elsewhere and that a smaller tube wouldn't make much of a difference.  I'm glad I was wrong.  The ST removed the T-piece and attached the valve that only lets air in.  The speaking valve also has a meter on it to measure the pressure of the air that is trying to exit through the valve.  In the prior tests the pressure immediately came in at 10 and went up to 40 before the ST removed the valve and allowed Tobias to breathe out through the trache.  The ST told us that a pressure reading under 5 would be normal.  Today with the smaller trache, the pressure reading was so low that I didn't think Tobias had tried to breathe yet.  The ST was so impressed that he decided to test Tobias by plugging the trache completely.  Tobias would have to breath in and out through his nose or mouth, a task he hasn't completed in over a month.  Once the cap was placed over the trache tube, all eyes moved back and forth between Tobias's breathing and the oxygen monitor like we were watching a tennis match.  For the span of several breaths we searched in silence for a sign of good or bad.  Neither came.  Tobias didn't even seem to notice that he was now breathing normally through his nasal cavity for the first time since he was intubated at the small hospital in my home town.  No machine pumped his lungs full or empty and no machine favored him with specialized air to make breathing easier.  He was breathing on his own.  Truly.

Now if we could just get him to wake up, we might be getting somewhere.  The ST tried all his tricks and mom and dad blurted out whatever we thought might wrest him from his slumber.  We played Post Malone as loud as we dared on the bluetooth speaker and Facetimed with grandma, Emily and Chris.  Even a command performance from Eloise didn't keep Tobias' attention.  Finally Tobias opened one eye while Katja was brushing his teeth with the ST and me patting him and talking lively to him.  It didn't last however, Tobias never really woke up and we had to let him rest.

It was the most exciting day for a long time.  With the air now passing through his nasal cavity and making a trip past his mouth, he has started using his jaws and tongue more.  My theory is that the air is stimulating an area that has been cut off from everything for several weeks.  Just like a prisoner released from solitary confinement, his mouth is starting to adjust to the exposure to an outside world.  He has masticulated several times, swallowed and best of all, he has been snoring.  After five weeks of watching a silent Tobias, it is comforting to hear him make noise.  It confirms that he is with us and will be part of our lives.  I know that I'm reading a promise into an involuntary act, but the last noise I heard him make was when he told me that he didn't need to go to the hospital and that he just wanted to sleep.  It feels like I have journeyed far from that time to this, and hearing him snore is a milestone to be celebrated and a motivating occasion to steel oneself for the uphill climb in the miles ahead.

The rehab doctor paid us a visit and to see for himself how Tobias was handling the capped trache.  He seems happy with what he saw and reported that he was backing down on the baclofen in favor of a more localized drug.  Baclofen works centrally in the brain to reduce the effects of storming, especially muscle rigidity, but causes drowsiness.  The new drug works on the periphery and should be able to handle the rigidity of his muscles without putting him to sleep.  Over the next few days Tobias will be dosed down on the baclofen in the hope that the new drug will be effective and Tobias will be more awake.  The search for the perfect Tobias cocktail of drugs continues.

Hope over fear.