Day 11 (Sep 6)

Bottom line: Today was a good day.  Tobias had a peaceful morning and didn't start storming until 1pm.  Even his storming was milder today, but it is still hard to watch and must be uncomfortable for him.  The doctors and nurses have had a successful day getting his medication dialed in.  We learned today that the most likely cause of his bleed is an AVM.  This is a tangle of arteries present at birth that can rupture later in life.  One of the two remaining drains to his brain was removed and his tracheostomy is scheduled for tomorrow morning.  He'll still need a breathing tube, but ventilation is more comfortable through the throat than the mouth.  They are also installing a feeding tube directly to his stomach so that his mouth and nose should be free.  The right side of his head is visibly bulging where the cranium was removed, but the nurse told us that this is normal and safe.  We are hoping for more days like this with hopefully even less storming.

This is the CT scan from today showing Tobias' brain.  It's inverted so the left side of the image is the right side of Tobias' brain where the bleed occurred.  You can see the section of cranium that was removed and how the brain is expanding out to the right where there is only skin.

Here you can see the restraints that keep Tobias from accidentally messing with his tube and lines.  You can also see a splint that holds his wrist at an open angle so that the arterial line can be read properly.  Tobias was bending his hand inwards and pinching the line that enters his artery.  This line is used to measure his blood pressure.  The foam brick in his hand helps to keep his fist from cramping.

Tobias wears special boots to protect his heels from absorbing too much pressure.

Detail:

Tobias played on the local soccer team as a teenager when we lived in England.  I loved attending his games and prowled the sidelines to stay current with the action.  Tobias is incredibly fast with the heart of a thoroughbred.  He could run the entire game and had a special talent for defusing offensive threats.  During one of the games Tobias came out of nowhere to dispossess an opposing player and passed the ball back to mid-field.  When the players cleared the area a mom from the opposing team asked her husband, "Who is that red-headed player?  Wasn't he just on the opposite side of the field?  Are there two of them?"  There is just one Tobias.

There are a few things I want to address before I run down the day's events.  First of all, thank you for your messages of concern for Tobias and your appreciation for the blog.  As I mentioned earlier, I'm writing it as a way for me to organize and understand the flood of information coming at me.  It helps me to feel a little control in this environment where I desperately want to help my son, but have no practical way to do so.  I also want to document what has happened so that I can share this with Tobias when he is well again.  There are many people to whom Tobias owes a debt of gratitude and I would like him to know how hard the nurses, doctors, medical staff and his family and friends fought by his side to bring him back.  I'm gratified that other people are finding the blog useful.  I know it is long and not particularly well-structured since I'm writing it in one draft.  A friend of mine who is far cleverer than I has agreed to exorcise the most offensive grammar demons without changing more than necessary.

You can leave comments in the blog, but I'm being careful to protect the identities of the medical staff and not to reference the hospital or location.  One hears stories of how misinformation inspires people to do hurtful things and so I don't want to share that information.  I have to approve all of the comments and I ask that you are careful not to mention any facts that would make it possible to guess where Tobias is or identify any people by anything other than first name.

A friend of mine noticed that I mentioned the lab work being done on the blood clot to hopefully identify the cause of Tobias' bleed and that I never followed up on it.  He also wanted to understand what I meant by Tobias "waking up".  If you have a question or noticed something that I should explain, please ask your question in the comment section and I will do my best to cover the answers in the blog.

The lab results on the blood clot took five business days to come back.  The doctor reviewed them with me last Thursday, but I forget to include the results in my blog.  There was a lot going on.  The pathology lab ruled out a tumor as the cause, but was inconclusive on whether an AVM (arteriovenous malformation, i.e., a tangled mass of blood vessels present since birth) caused the bleed.  Coincidentally one of the surgeons from the procedure came by today and told us that her best guess is that an AVM ruptured and caused the bleeding.  She said the blood vessels that she saw were misshapen and consistent with an AVM.  Even though the pathology lab couldn't confirm her prognosis, she believes an AVM was the culprit.  Her exact quote was "if it walks like a duck and quacks like a duck, it's probably a duck."  They have performed several angiograms where they release a contrast medium at the base of the brain arteries and then take x-rays to watch the flow of the blood through the brain.  This yields an image of the blood vessels in Tobias' brain and should be useful in determining whether there are other AVMs that could rupture.  Nothing has been found despite their targeted, intensive search.  One other point to note is that this doctor came in on her day off to check on Tobias "and a few others".  This is an example of why we feel that Tobias is in good care.  Her day off.  And she works 80 plus hours a week.

The other request from my friend was to explain what I meant by the term "waking up".  We were told at the start that it would likely be several weeks before Tobias would "wake up" given the extent of the original bleed.  I envisioned that Tobias would remain unconscious until his brain swelling decreased at which point he would open his eyes and start interacting with us in some way.  I have no idea what the doctor meant by the term "wake up".  The fact that his eyes are open at times is a good sign.  It is a good sign that he can move his thumb on request and his feet wiggle sometimes when he is trying to wiggle his toes.  His left eye opens about halfway and sometimes his right eyes is cracked open.  He doesn't track any objects in the room, but sometimes his eye moves like he is looking at something and sometimes he stares off into the distance.  We have moved a hand in front of his left eye, but he doesn't blink.  His ability to move his thumb is sporadic and he has never moved his thumb consistently or over a period of time longer than a few seconds.  It seems like moving his thumb is exhausting and he can't do it multiple times in a row.  Based on this evaluation, I wouldn't say that Tobias has woken up.  We don't even know if he is fully conscious or if somehow he is able to understand and comply with moving his thumb, but he may not really be aware he is doing it.  I'm not sure how the doctors will evaluate him, but I'll count him as waking up when he can consistently show that he is conscious of his surroundings.  That's not yet.  One neurosurgeon told us that the swelling usually takes six to seven weeks to dissipate.  We need to think in terms of weeks and months, not days.

Tobias is on a drip with pain-killer that has done a great job this morning keeping him comfortable.  The right side of his skull is visibly bulging where the cranium was removed, but the nurses assure us that this is normal and safe.  He was resting all morning and we went through all of the physical therapy exercises without his heart rate or blood pressure increasing.  This was the best morning that I have had with Tobias.  By far.  Unfortunately Katja wasn't able to see him this morning since she was taking a breather from all the stress and also helping get Sebastian ready for college.  While we were at lunch, Tobias started storming again and the medication wasn't able to keep his vitals down in the green zone.  Since about 1pm his heart rate has jumped between 130 and 150 bpm mostly, but has also dropped on occasion to 110 or spiked as high as 170.  A normal resting heart rate for Tobias is 65 - 70.  As I showed on the graph yesterday the heart rate can change over 20 bpm in a minute or two.  Although this sounds pretty bad, he looks much more comfortable today than yesterday and his vital signs have been lower than yesterday.  Tobias has a new nurse today and she seems to be very good.  All the nurses so far have been great, but some of them seem to have a special touch to keep Tobias comfortable.  I think that they all have a lot going on and it takes experience and ability to time the medication correctly to keep Tobias' storming at bay.  They need to know when to follow the standard process and when they need to get a neurosurgeon to approve a slight change in dose, schedule or medication.

While Tobias was still resting comfortably in the morning, one of the respiratory therapists came by to run a new test on Tobias.  They have been running the intrapulmonary percussive ventilation therapy where puffs of air are blown into his lungs about twice every second.  This pushes lung secretions through the alveoli so that they can be suctioned out.  Tobias' lungs have been pretty free of secretions, but he apparently has a section on his right upper lung that has collapsed so she wanted to give him some hyperinflation therapy.  It works just like it sounds.  The machine blows 2x the amount of air into the lungs in order to expand them.  She also ran a test to measure Tobias' breathing control and lung capacity.  The ventilator is already on the lowest setting, but as soon as Tobias initiates a breath, it supplies him with a mix of oxygen and air.  The therapist turned the machine completely off and, as I understood it, deflated the balloon that is holding the air tube in place.  She asked me to give Tobias the commands since patients often respond better to familiar voices.  I don't think that Tobias responded to me, but he did respond to the machine being turned off.  Suddenly it was like he gasped for air and his left eye shot open with a clarity that I haven't seen in it since before the bleed.  I thought we had Tobias back fully conscious by the look in his eye.  His whole upper torso shifted in the bed and it gave me the impression that he had just sat upright.  Unfortunately he didn't wink, give me a thumbs up and ask for a crossword puzzle, but the therapist said that his breathing values were very good and much better than she expected.  She had run the same test earlier and Tobias showed marked improvement.  She let Tobias breathe on his own for a bit, but then engaged the machine with 100% oxygen for a few minutes and Tobias faded back to his former consciousness.  It reminded me of when the tide washes away writing on a beach.  One second the writing is distinct and clear and then it settles back to just being sand.

As part of the PT exercises I extend Tobias' fingers from the permanent clutch that he has adopted.  During his storming episodes he clenches pretty tightly and the physical therapist brought him some foam pads to clutch onto so that his fingers don't close on emptiness.  The pads get dislodged, however, and I think his fingers must be painfully cramped after being held for so long in a tightly clenched fist.  The storming causes all of his muscles to contract uncontrollably for long periods of time.  Tobias tolerates the PT movements pretty well with the exception of the finger extension.  I first tried to extend them all at once, but this seems to really bother Tobias.  He rotates his arm to get away and he fights me on extending his fingers.  I think that it helps to speak gently to him, explain what I'm doing and ask him to relax his fingers.  Not always, but sometimes after a few seconds he loosened his grip and I can work with his fingers.  It helps to work with one finger at a time, but sometime his "get away" reaction still happens.  I'm guessing that it is painful to have his fingers extended and he is reacting to the pain, but it's only painful because his fingers are held so tightly for so long.  I'm trying to extend his fingers frequently and I'll see if he stops reacting so expressively against it.

Today was another big day because one of the two remaining drains in his brain was removed.  The doctor performed that procedure right in his room and allowed me to record it so that I can show it to Tobias later.  Mom had to step away, but it was fascinating to see the staples removed, the area cleared of dried blood and the several inch long plastic tube gently coaxed out of the inner part of his brain.  A small rise of blood followed the end of the tube, but the surgeon wiped it away and sutured the hole shut.  The drain stopped working a few days ago and despite the doctors and nurses flushing the drain, they couldn't get it to work again so the neurosurgeon team decided to pull the plug on it.  At the end of the drain the surgeon pointed out a collection of dried blood and noted that this is why the drain stopped working.  Tobias now has just one drain left to moderate the pressure inside his head by draining excess cerebrospinal fluid.  No one seems to be concerned about this, however, since his ICP (intracranial pressure) values have been doing well so far.  They will remove the final drain by pulling it out in small increments until it is no longer working, but I don't know when that process will be initiated.

I forget to mention yesterday that we had some disturbing activity on the floor just a door or two away from Tobias' room.  We heard a woman's voice shouting hysterically, but it was so distraught and kinetic that we couldn't understand the words.  A man then yelled "get down off of there" and the women screamed back in response.  We stayed in the room, but from our vantage point we could see all the nurses going out into the hallway.  The shouting, male and female, continued for a while, but then everything was quiet again.  The nurses stayed in the hallway and were all focused on something going on.  I felt like I was on the set of an ER television series and started thinking about how to respond if a crazed person came into our room.  Of course, nothing happened and after a few minutes our nurse came back in and explained that a woman had made her way onto the floor without authorization and security had to be called to extract her.  "Our security guards are well-trained in non-violent de-escalation", she said.  Aside from the ominous scene of covid patients right across the hall or covid nurses walking around with their "bee-keeper" protective suits, the ward that Tobias is in isn't how I pictured a neuro critical care unit.  The NCC ICU floor isn't really loud and manic in general, but in the few days we've been here we've seen and heard more excitement than I would have expected.  Apparently some brain injuries leave the patient conscious, confused and able to scream nonsense.  We've heard two cases of patients who fit that category.  They don't understand what is happening and yell violently to gain some sort of understanding.  What we could hear didn't make any sense.  We also heard the unplacatable wailing grief of a mother whose child suffered a similar injury as Tobias.  We only know what we can hear from our room and we don't ask about details.  With the covid patients getting moved about and concerns for patient data privacy, we are not allowed on the floor except for transit.  I might have been uncomfortable in the presence of these patients or their families earlier but after experiencing the first few days of Tobias' injury, I understand their behavior.

Tobias is scheduled for a tracheostomy and abdominal feeding tube OP tomorrow morning.  This will clear the lines from his nose and mouth and offer him a more comfortable breathing and feeding options with lower risk of infection.  I'll go into more TLDN detail tomorrow.