Day 29 (Sep 23)

Bottom line: Tobias' medications were reduced yesterday to help him stay more alert during the day.  Unfortunately he stormed again today, or at least had serious storming symptoms.  The doctors have made more minor adjustments to his meds and are going to re-evaluate tomorrow.  Tobias was accepted into the specialized rehab program that works with promising patients who aren't yet ready for the normal rehab process.  He was approved by the insurance and moved to the rehab hospital on the same day.  Tomorrow he begins the next phase of his recovery in rehab.

Detail:

After several days of relative consistency and no news, today brought with it a lot of reportable activity.  First of all, Tobias was awake much more than previous days.  I have been calling the night nurse almost every night to get an update on Tobias.  For the previous two nights the nurse gave Tobias some oxycodone because he was sweating at night.  The nurse interpreted the sweating to be a sign of storming and administered the oxycodone.  Tobias' vital signs were actually unchanged from the day so in fact, the only sign of storming was the sweating.  This stopped the sweating, but the narcotic stays in his system for the next day and makes him sleepy and less responsive.  I told Katja about this and yesterday she asked the nurse practitioner, whose role is between the nurses and the doctors in the hospital hierarchy, if the oxycodone was still necessary.  He agreed that oxy wasn't the right medication any longer and last night Tobias received no oxycodone to stop his sweating.  The nurse told me that he removed Tobias' sheet to cool him off and the sweating dissipated "pretty soon".

Without the oxycodone in his system, Tobias' eyes were both open for much of the day.  In addition to the reduction in oxycodone, the nurse practitioner also reduced the bromocriptine from "10" to "7.5". (I'm assuming this is in mg.)  This is a muscle relaxant that helps with the rigidity of his muscles, but also contributes to him being sleepy and unresponsive.  The effect was immediate.  Tobias was looking around much more this morning, but he didn’t respond very well with thumb gestures.  His arms were also much stiffer than they have been for the past several days, which is a reversal of the day-to-day decrease of muscle rigidity in his arms.  His wrists, for some reason, were especially tight.  Two steps forward, one step back.

In the late morning he showed the first symptoms of storming.  His HR jumped to mid-120s, his breathing increased to 38 breaths per minute, he started sweating profusely and the muscles in his arms and legs went into contraction mode.  His arms have frequently been uncomfortably rigid, but his legs were only rigid during a storming episode in the past.  This was disappointing, but compared to the storming when his heart rate ranged from 150 upwards, this wasn't a particular cause for concern.  But then it got worse.  By the afternoon his heart rate was in the 150s and he was grimacing with his face again.  It was difficult to watch, but I tried to speak calmly with him, even though I don't have any evidence that speaking with him helps at all.

In the middle of all of this agitation Katja handed me her ringing cell phone and asked me to answer it.  The lady on the other end was from the rehab hospital and was confirming that the insurance had approved the hospital’s request to move Tobias to the special program for unresponsive, but promising patients.  The program is called "Disorders of Consciousness" (DOC) and works with patients at three levels. The lowest level is for comatose patients.  The next level is for patients in a vegetative state and the third level is for patients like Tobias who are occasionally awake and have shown some ability to respond.  This is a fortunate turn in Tobias' recovery.  He will receive treatment from specialized nurses, physical therapists, occupational therapists and speech pathologists.  The doctors have been trained to work with DOC patients and work to get the most from the time that the patients spend in the rehab hospital.  They are more practiced at getting the mix of medications correct to stimulate the patient’s brain without overloading the brain's delicate circuitry.  It isn't a get-out-of-jail-free card, but it is more promising than the path through the LTAC.  The program is relatively new to rehab therapy and this university only has availability for a few spots.  We were told that there are only enough resources to treat two patients at a time.

Immediately after the call with the rehab hospital I got a call from the insurance case manager to confirm that Tobias has been approved to enter the rehab hospital.  A few minutes later a doctor in her second year of residency came into the room with a medical student in tow.  She is from the rehab hospital and wanted to see Tobias and start the initial assessment for his rehab.  I gave her a detailed run-down of Tobias' condition and she examined him.  She was a little concerned because he was storming again.  At the time of her visit Tobias' HR was in the 140s, but she was still confident that he would be transferred to the rehab hospital today.  I asked if he should get some additional medication for the storming and she left to confer with the neurosurgeons.

After the doctor and the med student left, I tried to work with Tobias to calm his storming down.  The HR continued to climb and Katja went to give the nurse a call to action when his HR hit 150.  I stayed with Tobias and noticed that his left arm was visibly more stressed than his other limbs.  He wears restraints on his wrists to keep him from inadvertently pulling on his tubes or IVs and while his right arm was rigid, it wasn't pulling on the restraint.  Tobias had moved his left arm, however, from his side to across his belly and bent his elbow so that his hand was almost reaching the trache in the middle of his throat.  His arm was stopped by the strap connecting the wrist restraint to the bedframe and Tobias was pulling with a lot of force on the restraint.  All of this pulling force was a result of the storming, but it seemed to me that Tobias had accidentally set up a vicious cycle because the stress of pulling so hard with his arm was worsening the storming and causing him to pull harder with his left arm.  I held his elbow with my right hand and took his wrist with my left and slowly pulled to straighten out his arm in the hope that it would break the negative re-enforcement.  Tobias' arm resisted, but slowly started to move and then it released suddenly a few inches before hardening up again.  This however seemed to do the trick.  His body relaxed and his heart rate dropped from 150 into the 130 region.  I don't really know if his arm stiffness was causing his storming, but getting his arm to break out of the rigidity helped to get the rest of his body to relax.  Over the next 15 minutes, I worked to straighten his arm and kept wicking away the sweat with a washcloth.  His heartrate dropped further into the low 100s and his storming episode was over.

An occupational therapist worked on Tobias later and told us that the doctors had discussed the storming symptoms and feel that they are potentially not caused by actual storming.  The theory is that Tobias' body is adjusting to the change in medication.  They want to wait another day to see how Tobias' body reacts.  It's interesting how we get pieces of imperfect information from different sources and have to build a picture of what we think is the truth.

At 7 o'clock they told us that Tobias would move presently to the rehab hospital.  At 8 o'clock they finally got everyone together to move him.  The rehab hospital is one year old and sits up above the rest of the city.  Tobias' room is on the city side so we have a commanding view over the entire city and the valley beyond.  It's very pretty.  Tomorrow he'll get evaluated by the various disciplines that will be working with him.  The sessions will be spread out throughout the day so that they don't overload Tobias.  It's hard for us to envision how Tobias will respond. He's been making progress, but only very slowly.  The insurance has approved a one-month stay with weekly updates to follow his progress.  We're trusting in the doctors' judgement that Tobias is ready to benefit from their program and we hope it jump-starts his recovery.

Hope over fear.