Day 14 (Sep 9)

Note to all: Thanks for your continued support and concern.  I have unfortunately not approved some of the caring and thoughtful comments because they mention the name of the hospital or our last name.  I'm trying to protect Tobias' privacy so please do not write our last name in your comments.  I'm concerned in the current political environment that people are doing crazy things and I'm being overly protective.  It's a mad world where a father feels that this is a prudent precaution.

Bottom line: Tobias had pretty good day.  His storming was mild to medium and the doctors let us know that he should soon be stable enough to leave the ICU.  He'll probably be transferred to a long-term acute care hospital early next week.  We were given a range of possible outcomes from recovery with need for rehabilitation over the next few months to never being able to leave the nursing home.  This journey continues to challenge us.

Tobias and his T-piece

Detail:

When Tobias (Toe-bee'-us) was born, his sister couldn't say his name properly.  All that came out was "Bias" (bee-us) and the name stuck.  Many people from his baby days still only know him as Bias.  But those were lean years and we had to economize so we shortened his name to just "B".  As "B" grew into a young boy his designation evolved again to become "B boy".  Since about high school, Tobias has preferred that his friends call him Toby instead of Tobias.  In the blog I'm pretty consistent in using his proper name, but in the videos and comments you're likely to hear any of his nicknames.

Yesterday was the first day that we didn't spend at Tobias' side because we took his brother to university.  We checked in several times during the day and it sounds like Tobias had a good day.  He is still storming, but the pain meds are keeping him more comfortable and his vitals signs aren't spiking as high.  This morning he is storming at a medium level and it's got me irritable.  I think I'm reaching an internal limit and my patience and forbearance are thin.  I want to see progress and I want my son back and not to have him in so much pain any longer.  I want some degree of certainty in his life.  I'm tired of holding his soft limp hand as he floats somewhere between life and death or his hard tensed hand as his body receives uninhibited stress signals from a damaged brain that can't turn them off.  I'm tired of not having any power to help him and I'm tired of not knowing what his condition will be.  I want to scream and rage and attack the adversary, but there is no foe, no enemy, there is only time and it won't be hurried or rushed.  It flows by like a slow river unaware and unconcerned by the trouble on its banks.

Normal air around us is 78% nitrogen, 21% oxygen, 1% argon, 0.04% carbon dioxide and some trace elements.  In order to enhance Tobias' ability to recover he is being given oxygen-enriched air through the ventilator.  The ventilator also supports Tobias by supplementing his air intake with extra power whenever he breathes too shallowly.  One of the next big steps for Tobias is to wean off of the ventilator to breathe on his own.  Currently the ventilator waits for Tobias to start a breath and then provides him with air that is 30% pure oxygen.  The therapists have been monitoring Tobias' breathing and have adjusted the machine to allow Tobias as much control as possible of his breathing.  First they dialed down the breathing support that Tobias received from having the machine do all the work to push air into his lungs and remove it to allowing Tobias to initiate the breath and sustain the intake.  He was originally on a higher percentage of oxygen in his tubed air, but he recently dropped from 40% oxygen to 30%.  His body is getting close to meeting its needs with the unprocessed air around him and the respiratory therapists are ready to test whether he is capable of breathing on his own.  The therapist replaces the ventilator tube with a hose that constantly blows humidified, oxygen-rich air.  The hose passes in front of Tobias' mouth, where a T-piece connects a tube from Tobias' trache into the hose.  Tobias is then completely disconnected from the ventilator and he breathes on his own with no support, except for the access to the humidified, oxygenated air.  The nurse and therapist monitor his breathing and 30 minutes later the nurse takes an arterial draw to examine the oxygen content in his blood.  If Tobias starts breathing too quickly, this is a sign that he isn't getting enough oxygen in his system and the test is terminated.  Yesterday was the first day that the test was administered and Tobias went for one hour in the morning and for two hours in the afternoon with no breathing assistance.  The nurse was very happy that Tobias was able to breathe for so long on his own.  This isn't surprising, however, given that Tobias is in excellent physical condition and that breathing is a lower-level brain function controlled by the medulla oblongata, which luckily didn't sustain any damage.  We're excited by these positive signs, but still concerned for the state of his higher-level brain functions.

Katja and I were surprised this morning when the nurse told us to expect a discussion with the case manager, a nurse who handles the the transition of the patient from the ICU to a different care facility.  The nurse also told us that she requested that the medical staff in charge of Tobias, referred to as "the providers", conduct a family meeting today so that we are aware of what Tobias' future care will be.  Up to this point all the answers to our questions have been that "every case is different", "it's too early to tell" and "it will take weeks and months to know".  I interpreted this to mean that Tobias will be in the ICU for several more weeks, at least.  He is still on the respirator, has a drain in his brain, is under risk of further vasospasms and is storming every day to vital-sign levels that in a healthy person would be alarming.  The case worker just visited us and discussed special facilities called long-term acute care (LTAC) hospitals.  The other option is to move to the "floor", which is an acute care ward just down the hall from the ICU ward where we are now.  It seems like they are starting the process to move Tobias from the ICU, but it feels like he hasn't been meeting the basic recovery milestones that the nurses have checked (responsiveness, pupil reaction).  In the same breath the case manager told us that they would never move Tobias before he was ready and that insurance companies don't want to pay the incredibly high cost of staying in the hospital ICU stations.  We are waiting to hear from "the providers" to learn what criteria Tobias needs to meet in order to be safely ready for the next stage of his recovery.

Tobias currently has three people working on him.  The nurse performs the hourly check up while the respiratory therapist actively adjusts his ventilator and monitors his breathing while another technician conducts the ultrasound test to measure the flow of blood through the arteries in his head that indicate if vasospasms are constricting the flow of blood to his brain.  His storming today has been more than the last few days, but still not as high as earlier.  His systolic blood pressure is high today for some reason, he has hovered between 160 to mid-170 and his heart rate is around 140.

We just spoke with "the providers", which really sounds like the name of a leadership group from a required-reading novel for early teens.  In our case the providers consisted of the attending resident neurosurgeon and the head "intensivist".  The intensivist is not a neurosurgeon, but has the say around the ICU ward outside of neurosurgery. The intensivist was the lead person during our discussion.  She has finished her residency, which moves her up the pecking order, but I believe the intensivist role is the lead doctor for the ICU.  Our basic question was "what does the future care for Tobias look like and what milestones does he have to meet to safely move to the next care station?"  I know that probably counts as two questions.  The intensivist, who has blond and pink dyed hair, explained that Tobias needs to be free of the brain drain and his ventilator settings need to be stable enough for him to leave the ICU.  She confirmed that he will not leave unless he is going to a facility that can safely take care of his condition.  Tobias is making good progress getting his lungs ready to leave the ventilator or at least go for long periods without the ventilator, which would qualify to leave the ICU.  The neurosurgeon explained that they are currently testing whether the drain in his head is still necessary.  The drain is gated by gravity.  The tube runs from inside his brain to outside where it is set into a plastic receptacle to collect any cerebrospinal fluid (csf) that drains out.  The receptacle is set a certain number of centimeters above his ear so that the pressure in his head has to overcome the weight of the fluid in the tube for the csf to flow from his brain to the receptacle.  The higher the receptacle, the more pressure is required to allow an outflow of csf.  The nurses have been increasing the receptacle height for the past two days.  This is a safe way to stop the drain from functioning without removing it so that it can be re-enabled if pressure in his brain increases.  The distance is set now at 15 cm above his ear.  This corresponds with the highest amount of pressure in a healthy person's brain.  Tobias' brain pressure can be read through the transducer as long as the drain remains in place.  It reads the ICP (intracranial pressure) and Tobias' ICP has been comfortably low since the second procedure removed the blood that clotted in his brain after the bleed.  Tomorrow they'll increase the distance to 20cm and if the ICP stays steady then the tube will be clamped for another 24 hours.  The neurosurgeon resident expects that Tobias will have no issues with the pressure in his head and predicts that he will be able to remove the last drain on Monday.  Between the last drain and the respiratory progress that Tobias has been making, he should be ready to leave the ICU early next week.

A typical progression for patients like Tobias would be to move to the acute care "floor" here at the hospital.  Another option is to move to an LTAC facility which is like a specialized nursing home to provide long-term hospital care for patients.  An LTAC facility actually has more care offerings than the acute care ward here at the hospital.  For example, they are not able to take "vented" patients here at the hospital, but LTACs have the capability to care for patients on ventilators.  The case manager also mentioned that LTACs are a lot less expensive and that insurance companies make it easier for patients to move there.  Since Tobias is not yet awake or truly responsive, it's hard to know what the next step of his care will be.  Tobias would ideally stay in the LTAC for a few weeks, demonstrate a miraculous recovery, wake up, start winning thumb wrestles and be ready to graduate to an in-patient rehabilitation hospital.  Presently however, his outlook doesn't appear so promising.  He may need to stay in the LTAC for months until his brain shrinks back to normal.  Hopefully at that point the neurosurgeon in charge of Tobias can reattach his cranium and Tobias will recover enough to begin rehabilitation.  It's also possible that Tobias' body will heal enough that he no longer needs the acute care in the LTAC, but doesn't show the progress needed for rehabilitation.  This means that he would be put in a nursing home so that he could be cared for while his body takes longer to mend.  The intensivist told us of a young woman she treated who spent six months in a nursing home after time in the LTAC before making a full recovery.  She also said that frankly Tobias may never recover enough to leave the nursing home.  "Every case is different."  "Think in terms of weeks and months."  "It's too early to tell."

The respiratory therapist set Tobias up on the T-piece over an hour ago.  Tobias seems to be doing very well.  His respiratory rate increased into the "concern" range only when his throat was suctioned.  This is visibly uncomfortable and is probably pretty painful.  Tobias appeared to be sleeping and was woken up by the suctioning.  He was probably gasping for breath for a good minute, but then calmed down.  Otherwise his breathing has been controlled and steady.  Currently he is breathing at 20 times a minute, which is coincidentally the same rate that the ventilator pushes when it is controlling the show.

Today was a fair day for Tobias, but a harder than average day for dad.  Mom did well.  It was hard to hear that Tobias may never be well enough to leave the nursing home and the lack of clarity or certainty is unsatisfying. There's a cave in a canyon near my home that friends and I used to explore when we were teenagers.  We thought it was cool to be inside the mountain during the day and not see your hand in front of your face.  With the flashlights off one easily lost orientation, including one's sense of balance.  With no visual clues it's hard to even know up from down.  I feel like Katja and I are in that cave right now with the flashlight gone.  We don't know which way is correct or where the journey is taking us, however we have no choice but to continue on through the blackness.  We hear from the doctors which way the cave may turn, but no one really knows so we hold hands and search together for Tobias hoping that we find him as soon as we can.  The next turn in the cave appears to be a transfer to an LTAC so Katja and I are researching LTACs in the area and will take some time tomorrow to drop in unannounced so that we can build an informed opinion on which choice would be the best for Tobias.

Hope over fear.