Day 62 (Oct 26)

It was a big day for Tobias.  He held his head up better than he has ever done since the injury.  He mouthed "mom" for the first time, and not once, but twice.  The medical team removed his trache and left him with a big hole in his neck that will apparently heal over in two days. And he got a new cast on his left foot to protect him from getting a contracture, where the muscle and bone bond, locking the foot in a permanent disfigured state.  Breaking news: Tobias just nodded his head (very slightly, but distinctly) to say yes to a question from Katja.  Another first!

Either the medications are dialed in right or Tobias' brain has recovered enough that it has passed the storming threat because Tobias has had many calm days in a row.  He has slight storming symptoms on infrequent occasions, but it feels like we have left the storming behind us.  I went with Tobias to his morning OT/PT session and he was sat on the end of the padded table again with his feet on the floor.  The purpose is to give him the sensation of having to support the weight of his torso and head.  He's been through this drill before, but he was holding his head up very well today.  It always eventually worked itself out of balance and down onto one side or the other, but he held his head straight for 30 seconds several times.

Working on holding up his head

The morning session was followed immediately by speech therapy and Tobias was exhausted to the point that he was unable to participate in much ST.  He couldn't do much besides fall asleep.  The ST did manage to get Tobias to eat three spoonfuls of ice, but he was unresponsive and had to be taken back to his room early.  The break did Tobias good, however, and after he slept for 30 minutes, he opened his eyes and looked alert.  On a lark I asked him who was standing on the other side of the bed.  He looked at Katja and mouthed "mom".  He hasn't been able to vocalize since the cranioplasty, but he'll mouth words for us occasionally.  Katja was focused on something else at that moment and didn't get to see Tobias' oral recognition of her, but she did hear my question to Tobias and heard when I said, "That's right, Tobias.  Nice job."  Now we had her attention, but I was worried that Tobias would only have enough awareness to respond the first time, but I explained that mom hadn't seen him mouth "mom" and that she would really like to see it.  I asked Tobias a second time who was standing on the other side of the bed and, in a rare occurrence, Tobias' second attempt was even clearer than the first.  His lips clearly formed the shape of someone saying "mom".  We could have ended the day right there in the morning, because Katja was happy enough for all of us to call it a good day.

Everyone was excited for Tobias to have the trache removed today, but nobody seemed to know when it would occur.  We summoned the nurse, who told us the lead respiratory therapist would know the time.  We summoned him and he just confirmed that it would be pulled today, but he wanted to speak with the resident doctor.  Finally after the afternoon OT session, the OT himself gathered all of the necessary decision makers around Tobias' bed and got permission to pull the trache himself.  The procedure is very simple.  The neck strap is unattached and the trache is pulled out.  End of story.  When the trache was downsized from a six to a four, the doctor and respiratory therapist who performed that procedure made a big deal about getting the four in the resulting hole (stoma) as soon as possible, as if the stoma would close permanently within milliseconds.  This time, however, there was no trache to replace the extracted one and nobody seemed to rushed to apply the bandage to the hole in Tobias' neck.  I had plenty of time to take a picture so that I can show it to Tobias later.  We even saved the trache to show him what he had been breathing through for so many weeks.  The bandage put over his stoma is a thick, wet, foam-looking bandage that is secured with a large rectangular transparent tape that looks like sticky Saran-Wrap.  The stoma is about as large as the diameter of my pinky and air still tries to flow through it.  The bandage is somewhat stretchy and it rises and falls with each breath like a balloon just starting to fill.  We're told that the stoma will close with in 24 hours, since Tobias is so young, but I have a hard time imagining that.  I'm even shocked that the bandage will only be needed for five days or so.  Incredible.

the stoma

This is the trache.  

Notice the cuff that blocked his air passage.

The afternoon PT session was used to put a cast on Tobias' left foot.  He can't control either foot, but the right foot is still recovering from a wound caused by the IV working itself loose in the ICU.  The wound is almost fully recovered, but it still carries a bandage and disqualifies his right foot from the casting process.  Because Tobias can't move his legs or feet intentionally, the overwhelming movement in his feet is caused by posturing, or involuntary movements caused by errant signals from the brain.  The movement ends up in his feet getting pointed like a ballerina en pointe, except that the points from both feet turn inward in an unnatural torturous-looking pose.  The cast holds Tobias in a position that forces his foot to stretch in the opposite direction from his grotesque en pointe to counteract the effect of his involuntary posturing.  The downside is that it restricts how his leg can be positioned, which is critical in keeping Tobias comfortable.  As I write this Katja and the nurse are struggling to get Tobias comfortable.  His heart rate was in the 70s for much of the day, but has increased to the low 100s and he is also sweating and stiffening.  This is his current version of storming and it can be managed if we find the right position for his body in the bed.

After the PT brought Tobias back with the casted foot, he settled into his bed well and fell asleep.  He must have been exhausted given the amount of activity during the day and his normal proclivity to collapse in a heap after raising his thumb a couple of times.  I asked the PT if she has worked with patients in Tobias' condition, how long such patients usually stay in the hospital and what a reasonable expectation for Tobias would be when he leaves the hospital.  She was unusually candid and open with us.  Up to this point, such questions would be guaranteed to receive the holy trinity of answers "Every brain injury patient is different", "It's too early to tell" and "It's a marathon, not a sprint".   She said that patients usually only stay 2.5 to 3 months in the rehab hospital.  This is usually an insurance decision, but she noted that our insurance appeared to be more patient-focused than many others.  Assuming that we stay three months in the rehab hospital, we would be leaving shortly before Christmas.  At Tobias' current rate of recovery, it's hard to picture that he'll be leaving in a state that will make it easy for us to care for him.  The PT also noted that often patients make their largest gains when they are fully conscious, which Tobias is not.  He appears to visit the realm of consciousness, but he doesn't stick around for long and his stays are clouded by his inability to express himself or manipulate his body.  Once his brain is sufficiently healed that he is well and truly conscious, he could make much larger gains.  It isn't uncommon for a patient to develop very slowly and then catch his or her stride and improve dramatically in a short period of time.  Our goal at this point is for Tobias to be able to communicate his condition and needs reliably, be able to ingest food through his mouth so that we can get rid of the feeding peg and to be mobile enough that we can get him to a shower or the toilet without multiple people to help or special machinery.  All of these seem like heady goals of an ambitious beginner at this point, but they aren't outside of the realm of possibilities.  We can't say what the right course of action for Tobias will be.  The key to leaving the hospital will be a plateauing of his progress or an end to the insurance benefits.  Our insurance is good and has been cooperative so far and Tobias continues to stay on the upward path leading to recovery.  We are trying to prepare ourselves for a decision that we'll have to make in the future, but don't have the ability to understand at this time.

Hope over fear.