Days 1 to 4 (August 27 to August 30)

Bottom line: Tobias suffered a massive bleed in his brain on Friday and was life flighted to the university hospital.  The doctors have been kind and generous in their explanations, but they don’t know what caused the bleed and it feels like they are preparing us for Tobias to pass.  He has had two brain surgeries so far and is hooked up to many, many tubes, lines and electrodes.  He doesn’t look good and must be in a lot of pain, if he can feel anything.  We are distraught, but hope that Tobias can be saved and regains a decent quality of life.  Messages of love, concern and hope for Tobias and our family have helped pick our spirits up when things were darkest.

Details:

On Friday, August 27th Tobias suffered a massive brain bleed while at a family gathering at my sister's home.  The emergency crew arrived quickly and the local hospital's CT scan confirmed a massive hemorrhage on the right side of his brain.  His life-flight to the university medical center was delayed by over an hour because of the high number of covid patients filling up the ICU units.  Virtually none of the ICU covid patients are vaccinated because almost no vaccinated person gets sick enough to need an ICU.  The university hospital eventually arranged space for Tobias, but a lot of time had passed since the hemorrhage and the amount of the bleeding put Tobias in a dire state.  If you think that you don't affect others by not getting vaccinated, please consider that your chances of tying up an ICU room needed by a brain trauma victim could cost them their life.  The chances are small that you may be the one to tie up an ICU room, but Tobias may not recover because of the delay caused by several non-vaccinated persons who never thought that they might be the one to tie up a room.  Every minute counts.  By the time he reached the university hospital the doctors didn't give him much of a chance for survival.  The lead surgeon told us later that he operated on Tobias just so that he could "look [us] in the eyes and say that he had given Tobias every chance to survive." 

Tobias reached the hospital in 20 - 25 minutes and was taken straight to surgery.  Katja and I reached the university just after midnight and were sent to a waiting room with the promise that they would inform us when the surgery was over.  Katja and I passed the night in failed attempts to rest, constantly fearful for Tobias.  Finally at six in the morning I called the operator and got connected to the area where Tobias was roomed.  The hospital mixed up the message and the nurses were told that we were still in Germany.  The actual operation was only about two hours long and we later learned that it was limited to the removal about one forth of Tobias' skull to allow the brain to expand under the pressure of the blood clot.  They didn't try to remove the blood clot because they had no MRI to understand what they were dealing with.

Tobias was in a very bad way even after the operation and the pressure in his brain was still far too high.  The ICP (intracranial pressure) is a measure used to measure the pressure inside the brain.  The ICP should be under 20, but Tobias' ICP was 27.  Research that I found online reported that long-term pressure above 22 can lead to brain damage and can be fatal.  The hospital staff worked to stabilize Tobias and when they were able to get him stable they performed an MRI.  The MRI showed a 3D model of the entire brain so that the surgeons understood the size and location of the blood clot.  It was necessary to guide the second procedure where the surgeons intended to "aggressively go after the blood clot".  The pressure on Tobias' brain was steadily increasing and passed 30.  In addition the doctors saw evidence of more blood in a new CT scan and knew that if they didn't operate on Tobias to remove the blood clot, he wouldn't have survived. The decision was made to move on to the second procedure to open Tobias' skull.  The second procedure happened on Saturday, but to us it felt like several days after Tobias had been admitted.  Time was passing very slowly and a lot was happening the whole time with bits of information about Tobias emerging along the way.

The second procedure was a success.  The CT scan before the second procedure showed a large grey pancake looking object covering one third of the right side of Tobias' brain.  This was the plum-sized clot that formed from the bleed.  The midline of his brain was displaced by 13.4 mm in the middle where the bleed had pushed the normal brain out of the way.  After the procedure the grey pancake was gone and the midline was displaced by 3 mm.  Tobias' ICP dropped from 30 to 8 due to the second procedure.  ICP values under 20 are targeted and ICP values under 10 are great.  I found an online resource that claimed a normal ICP of a supine adult should be in the range of  7  - 15.

Tobias' vital signs were all now in an acceptable range and he appeared to be stable.  It was a little disappointing because we were hoping that the doctors would be able to determine the cause of the bleed during the operation, but they were unfortunately unable to find anything conclusive.  The three most likely causes of such a massive bleed in a young, healthy, fit person are an AVM (arteriovenous malformation), a tumor or an aneurysm.  An AVM is a tangle of blood vessels in the brain that is formed at birth and can lead to a weak spot that ruptures later in life.  A tumor is a mass of irregular formed cells that can have thin walls that can lead to a rupture.  An aneurysm is a weakness formed in an arterial wall that can lead to a rupture.  During the MRI analysis and during the procedure the doctors found no evidence of an AVM, aneurysm or tumor.  The CT scans are inconsistent with the profile of a blood clot and the neurosurgeons think an aneurysm is very unlikely given Tobias' age.  Basically the doctors do not know what caused the artery in Tobias' head to bleed.  One hypothesis is that the bleed was caused by a small tumor that was destroyed during the bleed or the clot removal.  Samples of the removed clot were sent to pathology and should provide proof or disproof of a tumor when the results come back in five days.  The head surgeon told us that it is possible that they may never know the cause of the bleed.

Since the second procedure things have calmed down a lot and Tobias' condition has been stable.  The doctors are still very concerned because of the size of the initial bleed and the time that the brain was under high pressure.  In addition to the problems caused by the high pressure, blood outside the arteries in the brain makes bad things happen.  The brain tissue can become irritated and create the danger of a secondary swelling event 24 to 72 hours after the bleed.  The arteries also do not react well to blood being on the outside and they can respond by "clamping down".  The risk of a secondary swell can further damage brain cells as well as exerting pressure all the way to the brain stem, at which point the doctors "have very limited options".  Luckily the care at the university hospital has been fantastic and they have been quick to detect and deter any negative developments in Tobias' vital signs.

Today is Monday and Tobias is in the process of recovering from the initial brain trauma.  Luckily he lived through the first critical days.  It was touch and go.  He is now stable and exhibiting signs of a positive outcome as well as signs of a negative outcome.  The doctors are not saying that he will live, but they are not preparing us for the worst as they did on days one and two.  The lead surgeon has been clear that Tobias will “have significant deficits” even if he survives and that his body may take months to wake up.  The most optimistic predictions are that he may wake up in a few weeks.  He is still in danger from a rebleed or secondary swelling as well as infections etc., but these are low risks at this point.  The doctors don’t know what caused the bleeding so they can’t be sure the problem has been eliminated.  The biggest risk is that the initial damage has left Tobias brain dead or severely handicapped, but we may not know that for weeks or months.  We are hoping now for a few days of stable vital signs so that his body and brain can recover.  At that point the doctors will perform another MRI to see what shape Tobias' brain is in.  They may be able to give us an early, but inconclusive prediction of what permanent damage Tobias has suffered.  

Tobias currently has 4 IVs plus a central line that delivers medicine directly to his heart.  He has 2 arterial lines, a feeding tube through his nose, a breathing tube to his lungs, a catheter, a port on his femoral artery for future angiogram access, four drains leading fluid away from his brain and 22 electrodes glued to his skull that are measuring his brain waves for signs of seizure activity.  His head is shaved to make room for the 150 plus staples from his forehead down the right side of the top of his skull to the back of his head before curving down and back to end by his ear.  He has had 5 or 6 CT scans, 2 angiograms and 2 surgeries on his brain.  He hasn't been in the hospital for four days yet.  He is luckily in excellent health and fitness.  He looks like a "ripped" pitbull sleeping on his hospital bed due to his addiction to the gym where he did things like several sets of pull-ups with a 45-lb. weight attached to his waist.

It's been a dark path for the past few days.  There were many times when we sat without words because the only things in front of us were unspeakable.  Saying them might allow them to become true and that would crush us.  We're in a better place now than two days ago but we still break down occasionally.  We are trying to let hope rule fear and having your support helps to keep our spirits up and deal with the darker moments.  I will update this blog occasionally so that you can find out about Tobias' condition.  Thank you for your concern and love for Tobias.  We just want him back with the chance to live a meaningful life.  He has a lot to offer the world.