Day 12 (Sep 7)

Bottom line: Tobias received a tracheostomy and and abdominal feeding tube today.  These are more comfortable and safer alternatives to a breathing tube through the mouth and a feeding tube through the nose.  He looks much better and should have a quicker path to recovery now, but the surgery led to the worst 30 minutes of storming we have seen until the pain medication kicked in.  He is now down to a manageable level of storming and we are looking forward to the next few days to see how the "trache" will impact his ability to respond.

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This is the Tobias we want back.

Detail:

My father passed away when Tobias was three.  At the funeral, all of the grandchildren gathered in front to sing and since Tobias was so small I had to kneel beside him for encouragement.  The verses of the song were too much for his three-year-old memory, but he knew the chorus.  Tobias sang the chorus with such energy and shocking volume that he induced a lot of happy laughter in the audience. One of the attendees, my friend and also my sister's brother-in-law, said that he was originally planning on having my sister's husband sing at his funeral, but he had now changed his mind and was going to book Tobias.

At 7:30 this morning the hospital staff delivered Tobias to the operating room where the breathing tube was removed from his mouth and throat.  The surgeon cut through the skin on his neck just below his Adam's apple, moved the muscle tissue aside and sliced a one inch opening into his windpipe.  A new breathing tube was inserted and secured in place with a balloon that expands inside his throat.  The outside element is held secure with a strap around his neck.  Tobias now has a tracheostomy that will be a safer and more comfortable way for him to receive breathing assistance for an indefinite period.  The word tracheostomy comes from the Greek words for "trachea" (windpipe) and "mouth".  The hole left in the neck is referred to as the stoma, which is the Greek word for mouth.

The doctors have been speaking with us for several days about performing this procedure.  The tumor specialist, who was involved in the second procedure that saved Tobias' life, felt at that time that a "trache" /trake/ would be needed.  The trache is preferred anytime a breathing tube is needed for longer than two weeks.  A breathing tube through the mouth is more painful and more prone to an infection in the lungs.  It abrades more on the mouth and throat where the majority of nerves are encountered through the air passageway.  Tobias' lips were often stained with blood seeping from inside his gums and his lips were swollen and pretty beaten up from the breathing tube.  A person's tongue also swells uncomfortably.  We knew that he would be much more comfortable with the trache.  The trache is cut in below the vocal chords so it won't affect his voice as long as he doesn't need it permanently.  It should help in his recovery because he won't need the same level of sedation for pain management.  Less sedation = more alert Tobias = quicker recovery.  He has been breathing on his own for several days and we were hoping that he wouldn't need the breathing tube at all, however, he's still too knocked out to be sure that he won't have breathing complications and he hasn't shown the ability to cough up secretions.  Without the breathing tube and associated ability to "suction" his throat, secretions could make their way into Tobias' lungs and become a petri dish for infections.  Once he has shown an ability to cough his way to a secretion-free set of lungs the process of removing the tube can begin.

One obvious downside to the tracheostomy is the additional hole in Tobias' body.  If all goes well this will end up as no more than a small scar and an interesting story to tell, but by committing to the tracheostomy you lock into at least a six-week process.  Once the trache is no longer needed, a succession of smaller tubes are put in place and the amazing human body closes the "stoma" around the diminishing tube.  Eventually the hole is small enough that the body can close it on its own and the tube is removed.

We still don't know where Tobias' path will go.  I treat this uncertainty the same way I treat the concept of eternity.  Trying to understand it makes me unsure of anything and it does me no good to focus on it so I don't.  Tobias is giving us mixed signals.  Sometimes his pupils react, sometimes his thumb moves on request, sometimes one or the other, sometimes none of the above.  The nurse explained that this is uncommon.  She's worked here for ten years and never seen a patient who can respond with movement, but still have the NPi values stay at zero for hours on end.  We've got to keep in mind that it will probably be months before we have a clear picture of what deficiencies we will have to work together to overcome.  His storming has been upsetting to us, but the medical staff feel that he is okay.  Sometimes he'll respond immediately with his thumb, but then it can be a day or two before he deigns to give us a hint that he is still behind the curtain.  He must be somewhere, however, because he knows when I'm trying to video his thumb.  If I don't get up when the nurse is running him through the once-an-hour tests, he's sure to show his thumb, but when I've got the camera rolling, he refuses to perform.  That's typical Tobias.  He has been trending in the right direction, however.  He's showing more thumb and he can move his feet slightly when he's asked to wiggle his toes.  His right side is more consistent, but he even responds on the left side when the nurses pinch him.  I don't like to stay around for the pinching because it looks vicious.

Storming is very uncomfortable to watch.  He looks like he is having a seizure with his body taut and shaking, all his muscles contracted, his back arched.  His arms twist and withdraw as if he's trying to get away from something.  The monitor starts to beep a warning that his heart rate is too high while red lights flash in two separate locations.  The heart rate number is shown in large font so you can't miss being reminded of the danger and the EKG graph goes from a regular signature with plenty of space between the highs and lows to a scribble of line that goes from the top to the bottom of the screen and looks like a child is trying to color in the entire area.  The ventilator horn is percussive and surprising whenever Tobias breathes out of line with the normal parameters.  The nurses reassure us that all is well within the normal storming process, but it is hard to watch.

Tobias' storming was particularly severe after the surgery.  His sedation from the surgery was wearing off, but the pain medication that has been the most helpful for him has to be fed through the feeding tube and hadn't been administered yet.  During the surgery he was fitted for a feeding tube directly into his stomach and the prior feeding tube was removed from his nose.  Just like the trache, this is a safer alternative for long-term care, but Tobias has to wait for several hours before it can be used.  The technicians brought a movable x-ray machine directly to his room to confirm that the "peg" as it is called was correctly placed, but Tobias still needs to wait a few hours for it heal enough to be viable.  He was approved for an upped dosage of the IV pain reliever, but this all took time as Tobias lay shivering and posturing before us with no clear relief in sight for about 30 minutes.  Perhaps it was the combination of the missing sedation, the trauma of another surgery and the toll of the past week, but he was storming without the normal rest periods in between peaking.  Finally the IV pain killers started working and he relaxed to manageable levels.  His heart rate has been a consistent 130 - 140 and his BP around 150 for the past few hours.  I don't dare touch him or speak with him for fear of adding more confusing stimulus and setting off another peak.  I'm actually calm and confident that he is not in danger, but it pains me that he isn't able to rest and relax.  The nurses assured us that he won't remember any of this, which I found to be a misplaced comfort.  Would anyone feel indifferent about getting punched in the face if they knew they wouldn't remember it later?  It isn't the memory of pain that I want to protect Tobias from, it is the actual pain itself.

There was a short time slot while the sedation from the surgery was still keeping the storming at bay where Katja and I got to see the best of Tobias since the bleed.  With the ventilator and feeding tube removed from his face he looked like our son.  The swelling has continued to decrease and he looked like he was sleeping in.  He moved slightly once in a while and it felt like our son will make his way back to us.  We are still concerned that he will remain in a permanent vegetative state, but once in a while he shows us something that is authentic Tobias and promises the possibility of recovery.  Choose hope over fear.