Day 8 (Sep 3)

Bottom line: It was an average to slightly poor day medically for Tobias and a very difficult day emotionally mainly for his mom.  The vasospasms came back and the doctors moved up his angiogram to treat the vasospasms.  He has been storming pretty hard, he is not responsive to commands and his pupils are no longer reacting to light.  The doctors tell us that this can happen since the brain waxes and wanes during its rehabilitation, but it wasn't fun to see it play out in reality.  We don't know what outcome awaits us, but we have decided that our best option is to move forward with hope.  We are grateful that Tobias is still alive and has a chance to recover.

 

Detail:

At this time a week ago we were standing in the emergency room listening to the doctor tell us that Tobias' life was in danger from a massive brain bleed, but that she was having trouble finding him a room in a hospital that could treat him.  He was having seizures and couldn't communicate any longer...

It was another tough day for Tobias.  He was storming the whole day and he is less responsive than earlier.  Each day the medical staff take an ultrasound to measure the velocity of the bloodflow in his major brain arteries.  Today they noticed that his blood vessels may be experiencing vasospasms again.  They gave him medicine through the angiogram catheter about two days ago for vasospasms and this seemed to have worked well.  The medicine may have worn off because his ultrasound results indicated that the blood vessels are constricting again.  The chief neurosurgeon decided to perform another angiogram today.  If the vasospasms are occurring again, he'll give Tobias another shot of the medicine.  They are also dosing Tobias with another medicine meant to counter the vasospasms administered through the two brain drains that are still in his head, but the combination of everything doesn't seem to have put the vasospasms to rest.  Tobias was scheduled for an angiogram on Saturday already and we were hoping that his vasospasms wouldn't be a problem so that the port in his leg could be removed.  The port was left in place so that the doctors could access the femoral artery for subsequent angiograms without having to poke him again.  The port causes some discomfort indirectly, if not outright directly, since Tobias can't bend his leg without damaging the port.  Because his head needs to be as vertical as possible, he is now lying straight in bed with the bed tilted to give some degree of vertical to his head.  Gravity causes his body to slide downward slowly in bed and puts more pressure on his feet, especially his heels.  The nurses pull his body back to the top of the bed every few hours.  They call this process "boosting".  I'm sure he'll be more comfortable when he can be in a sitting position to spread the support of his weight.

Because of the ultrasound results, the doctor pulled the angiogram forward from Saturday to today.  This is a result of the doctors being extra careful, but we appreciate the care and the attention to check things before they become serious issues for Tobias.  At first we were told that the angiogram was going to be immediate, but some emergency came up and then we got into the regular schedule of angiograms and Tobias' angiogram is now planned for 6pm tonight.

There are still remnants of the blood clot in his head but these are only small pieces and won't cause additional pressure on Tobias' brain.  The clot leftovers can cause problems for the drains, however, by plugging them.  Each of the two drain tubes comes out of his head and has a valve after about 12 inches of tubing before continuing on to a larger receptacle to hold and measure the outflow.  When the tubes get plugged the nurses can flush the drain from valve outwards, but a doctor must flush the drain from the valve back into the brain cavity because this involves forcing saline into Tobias' skull.  When the blockage is flushed back into the head it either breaks up into small pieces that can drain successfully or it stays in one piece and causes another blockage later.  Two doctors have been flushing one of Tobias' drains back into his head but the blockage continues to reoccur.  The nurses detect a blockage when the drain fails to produce or when the ICP scores are unrealistic, however the ICP values are only valid when the nurses switch the drains from actually draining to measuring the pressure.  So basically we only get an update on the pressure once an hour when the nurse runs the check.

Just before lunch, Katja and I were at Tobias' side, but because he has been storming a lot this morning we weren't touching him or speaking with him.  He sometimes tightens up and looks like he is uncomfortable when we touch him or give him too much stimuli.  The nurse came in and began her hourly checks and Katja and I were both alarmed when one of the drains showed an ICP of over 40.  Earlier we learned that anything above 20 was dangerous and when Tobias was at 30 the doctors decided to do a second procedure to relieve the pressure.  This was too much for Katja and she left the room.   I was concerned, but the other drain showed an ICP of 14 and I was trying to think if a rebleed could be local to the first drain but not yet be affecting the second drain.  The nurse retrieved the attending neurosurgeon who took everything in stride and didn't seem excited at all.  He confirmed that both ICPs should be roughly the same and that the high ICP had to be incorrect.  When a blood clot clogs the tube the ICP can be either way too high or way too low.  He worked on the drain for a little and it now shows a normal number.  A little knowledge is a dangerous thing and Katja and I were both very concerned when we thought Tobias may be experiencing a rebleed with more brain damage and a whole new set of problems to overcome.

Tobias continues to show small signs of recovery.  A few days ago the doctors tested him to see if he can initiate his own breathing.  Up to that point the respirator was doing all the breathing for him.  The machine can be set to force a certain number of breaths per minute or it can wait for the patient to initiate the breath before kicking in to provide support.  It always has to assist somewhat because even a healthy person would struggle to breathe through a several-foot-long tube with a diameter about half of the size of a garden hose.  Since Monday the hospital staff have been turning down the respirator to wait first for Tobias to initiate a breath.  This process will continue to teach Tobias to initiate his own breath and to execute the breath for the correct duration.  The respiratory therapist told us that this is a normal process and can last a few weeks for patients in Tobias' condition before the patient has reached the level where the machine assists only minimally.  It took Tobias two days.  The therapist told us last night that the doctors and medical staff have been amazed particularly by Tobias' strong lungs and his ability to breathe without the respirator helping him.  He still needs the breathing tube as a safety precaution and there is a limited number of days that a patient can be safely intubated through the mouth.  After 14 - 17 days there is an increased risk of infection and pneumonia, plus the intubation through the mouth looks very uncomfortable and must be painful.  On Tuesday Tobias will likely receive a cut in his throat just under his Adam's apple where a shorter tube will be inserted and the nurses will be able to keep his mouth clean and his lungs cleaner.  This process is called a tracheostomy.  Once he is in a more stable state and able to breathe on his own, the tube will be removed and the hole in his neck can heal over leaving just a small scar.

Today Tobias has taken half a step backwards unfortunately.  He has been less responsive than two days ago, which the nurse tells us is highly correlated with the effects of vasospasms.  As vasospasms clamp down the arteries, the brain doesn’t get enough oxygen.  In addition but unrelated to vasospasms, he is afflicted by the effects of the storming.  His NPi (pupil reaction) scores are zero and he hasn't been moving his thumb.  His eyes are more frequently open and he seemed to blink them once for me when I asked him, but he hasn't been consistent at all and seems to be far away.  The half-open eye has been difficult for Katja to see and I can tell why.  He just stares off into space and looks dead or vegetative.  We know there will be days like today and we had been spoiled by the positive days on Tuesday and Wednesday coming off the worst days of our lives leading up to Tuesday.  During their rounds we peppered the 6th year resident with many questions.  Importantly we learned that 1) The angiogram medicine that stops vasospasms has a half-life of 12 hours so Tobias may suffer from vasospasms again, 2) Vasospasms can last about one month, 3) the swelling in Tobias' head should last six to seven weeks, and 4) the storming that Tobias is experiencing is typical for people who have thalamic injuries, which means that the thalamus has been affected.  The thalamus is the part of the brain that lets all the other parts communicate.  Storming occurs when the thalamus sends out uninhibited messages to the body that there is a problem, but it doesn't tell the body what type of problem and it doesn't stop easily.  Storming can take weeks or months to subside.

It was a difficult day to see Tobias unresponsive, in apparent discomfort or catatonic depending on the hour.  Medically he is doing fine given what he has gone through, but emotionally Katja took things pretty hard.  Tomorrow we'll return with the hope that Tobias has had a good night, that the vasospasms are gone and the storming is less intensive.  We don't know what outcome awaits us, but we have decided that our best option is to move forward with hope.  We are grateful that Tobias is still alive and has a chance to recover.