Day 16 (Sep 11)

Bottom line: Today was the best day in two weeks for Tobias.  The combination of a proactive nurse and the removal of brain stimulant drugs that were likely exacerbating the storming have given Tobias a well-deserved day of relative rest.  His last brain drain was removed and he got a dose of physical therapy that figuratively and literally stretched him. He responded well and loosening his core helped to give more mobility to his extremities.  The nurses have him breathing on the T-piece since eleven this morning with the goal of having him use it through the night.

He will likely be moved out of the ICU to the "floor" tomorrow or Monday.

Detail:

Two weeks ago we were just coming to grips with the aftermath of Tobias' injury.  The doctors were painting a very dim picture of his prognosis and we were in a very dark place.  Fast forward two weeks and the ICU doctors are talking about moving him to the next care station in his journey to recovery.

Today has been a very good day for Tobias.  The best day since the injury.  He has a new nurse who seems very confident and has tried to "stay ahead" of his medication needs.  We also spoke with the nurse practitioner who told us that she has been advocating to remove the two stimulant drugs that Tobias has been given over the past several days.  Her rationale is that storming is brought on by the brain re-engaging and the stimulants are putting his brain in overdrive relative to what it has been doing in the past two weeks.  She was successful in lobbying the providers to remove the stimulants and the result is that his storming has been minimal today.  We don't know which factor has made the difference, but he is definitely doing much better today.

Note to future Tobias: just so you know what medications were used to get you through all of this... I asked what medications you have been given and was shown a list of over 30 drugs that have been part of the treatment.  The list showed everything from the mouthwash to the antibiotics to the pain medication. I'm just going to cover the main ones that I hear about.  The stimulants used are modafinil and amantadine.  These act to increase brain activity and help brain-injury patients come back online quicker.  In this case it looks like they instigated and aggravated the storming effects.  These medications will likely become part of the treatment again after the brain has had a chance to heal the parts that are causing the severe storming.  There are several medications used to directly combat the effects of storming.  Buspar is an anti-anxiety medication and is given to relax the patient's nervous system.  Bromocriptine is a drug often used for Parkinson's disease that works on the muscles to relax them.  Baclofen is used to reduce the impact of muscle spasms.  Fentanyl is a pain reliever that acts quickly, but also dissipates quickly and can cause sedation.  It's used to take the edge off of storming spikes and is given through an IV. Oxycodone is a pain reliever as well but takes longer to act and holds the effect for longer.  It is delivered through the "peg" or feeding tube directly into the abdomen.  The nurse usually mixes up a cocktail of Tylenol and oxycodone in a cup with saline solution.  The nurse draws this concoction into a syringe that looks like it belongs on a farm and injects it into the feeding tube.  Saline solution is used as the drug delivery medium so that Tobias' sodium values stay high.  Having a higher than normal percent of sodium in the body helps to draw water out of the swollen tissues and reduces the pressure in the brain.

A new neurosurgeon resident came in today.  We haven't met her before but she actually assisted in Tobias' second procedure to remove the blood clot.  The head neurosurgeon sent her to remove the final EVD (external ventricular drain) from Tobias' head.  This is a day or two earlier than the process that was explained to us.  Normally there would be a 24-hour period where the drain is clamped before it gets removed, but Tobias has done well with the higher gating pressures that were applied to the drain.  Normally a patient would still drain cerebrospinal fluid (csf) as the collection receptacle is raised, but Tobias' output has been minimal so the neurosurgeon decided to remove the drain without the 24 hour clamping test.  Tobias now has zero tubes coming out of his brain.  Over the past few days he has also lost his arterial lines and several of the IVs.  He has no IV drips and receives his medication through the "peg" to his stomach or through one of three remaining IVs.

The occupational therapist (OT) visited Tobias and brought the physical therapist (PT) with her.  The difference between the two roles is apparently that the OT works on the upper extremities, including head movements, eye tracking and shoulders.  The PT works on the lower extremities, including mobility.  So far Tobias has been treated like a Ming vase, but these two ladies gave Tobias a workout that he wasn't used to.  I knew something was up when they asked for his brand new crash helmet.  Patients with bone flaps (part of the cranium bone has been removed) are required to wear a specially made helmet whenever they aren't lying down in bed.  Now that the drain has been removed, Tobias' head no longer has a gravity-driven leak so the OT wanted to get him to sit upright.  She noted that his muscle tone was stiff and she wanted to put him through some standard exercises to loosen him up.  The PT wasn't present yet so she had me put the helmet on his head while she held his head in place.  The helmet looks like the kind of bike helmets that have no visor.  The inside of the helmet has normal padding, but on the right side, where Tobias is missing his cranium, the padding has been removed and there is just a layer of soft material.  I was expecting something more complicated, but the helmet is simple.  I was justifiably nervous about putting the helmet on since it would be in contact with his brain and only have a layer of skin separating brain from helmet, but I complied immediately and we got the helmet in place.  The PT came and together the OT and PT held Tobias in place as they maneuvered the bed into a chair configuration.  Tobias woke up and had both eyes open but he can't focus on anything in particular and wasn't able to respond by moving his thumb, etc.  This is likely a result of the lack of the stimulus medicine.  The two ladies carefully held Tobias so that he didn't fall completely forward or to either side.  At one point they asked me to support his shoulder while the PT supported his head and neck.  It was incredible to see Tobias move from lying down to a slumped over sitting up posture.  Both ladies were busy moving his various parts through their ranges of motion and the OT moved each of his legs to a cross-legged position.   They both worked together to have him bend at the waist and move his head from slightly back to a full forward nod.  Tobias was almost completely unresponsive.  He moved his shoulders and head a little from side to side, but was unable to comply with any move requests.  After about 30 minutes the two ladies laid the bed flat and shifted Tobias back to a supine position.  I got to help one more time when the ladies "boosted" Tobias to get his head to the top of the bed.  I lifted his ankles to remove the drag and helped to push him upward in the bed.  Both the OT and PT were amazed at the increased flexibility that the 30 minutes of work gave to Tobias' body.  His arms and legs were previously stiff and hard to bend, but after changing his posture and letting gravity and their exercises work on his core, his arms and legs were relaxed and pliable.

We have brought in the bluetooth speaker that we gave Tobias for college.  I don't think it saw much classical music pass through its drivers while in Tobias' possession, but for the past two days it has been comforting Tobias and his parents with Spotify's "Peaceful Classical" playlist.  My favorites are always the pieces from Mozart.

Tobias' has had a calm day up to the late afternoon.  He started to storm again but it has been mild.  The respiratory therapist took him off the ventilator at 11 this morning and he has been breathing with the T-piece since then.  The nurse wants to push him on the ventilator and keep his medications as low as possible.  The storming has been getting worse in the afternoon so we'll see how long Tobias can go before he needs to come off the vent.  Tobias started to storm more the longer he was off the ventilator, but he was just within the acceptable ranges for his respiratory rate and the measure of oxygen in his blood being read from the SPO2 device attached to his ear.  The device shines a red light through the cartilage in his ear and measures the amount of oxygen in his blood.  The light accentuates the translucent nature of his ear and when the room lights are dimmed it looks like a lonely illuminated Christmas tree ornament.

The nurse is trying to push Tobias as far as possible on the T-piece so that he can show that he isn't in need of the respirator.  We went to have some dinner in the cafeteria and when we returned he was still breathing through the T-piece and his vital signs were back to a 120 bpm HR and 120 BP.  The night nurse informed us that they are going to try and let Tobias go the entire night breathing on just the T-piece.  Katja and I wish we could stay and watch over him, but we have trust in the nursing staff and their knowledge of the best way to bring Tobias back.

It seems like a long time ago that Tobias had the brain bleed and it also seems like it just happened.  My perception of time has been distorted and I forget whether something happened today, yesterday or earlier. I have to remind myself not to expect that Tobias will recuperate quickly.  It breaks me a little to see him unable to respond and I think of where he should normally be right now.  I remind myself that he is on a path that can lead to full rehabilitation and recognize that he has been faster than expected in recovering some physical abilities that prelude the neurological responses his mother and I would so much like to see.

Hope over fear.