Day 15 (Sep 10)

Bottom line: Today was a rough day for Tobias.  He suffered from intense storming with heart rate and systolic blood pressure over 150 for much of the day.  The storming was potentially exacerbated by the effect of weaning Tobias off of the ventilator.  He was off the ventilator for 9 hours and his body was working hard to process enough oxygen.  His storming grew progressively worse as the hours ticked on.  When the ventilator was reattached his body seemed to be more relaxed but his heart rate and blood pressure still remained over 140.  Finally medication settled him down and he is now in calmer territory with 120 bpm heart rate and 130 BP.  The doctors are still talking about moving him out of the ICU early next week, but we would like to keep him here.  Our parental eyes see signs that he isn't stable and needs to maintain the high level of care in the ICU.  The same eyes think that his brain swelling looks better and we hope that this foretells more signs of recovery in the coming days.

Detail:

Tobias has loved the outdoors since he could first express himself.  We have lots of stories of the bugs, flora and biological wonders that attracted his attention.  When he was ten all he wanted in the world was a kayak to go exploring in nature.  He and I attended a kayak swap and emerged with two kayaks and a roof rack for the car.  One of our first outings was in a small natural lake near our home where we spent a lot of time drifting slowly near the shaded banks in mere inches of water.  Tobias couldn't get enough of the plants and bugs he saw just an arm's length away.  For a change of pace we paddled to the middle of the lake and Tobias surprised me by putting his hands onto the side of my kayak and pulling it close to his so that our kayaks touched as far along the edges as possible.  He gave me a big smile and said, "Dad, this is it." and I knew he was genuinely happy as our kayaks hugged in the center of the lake. 

Katja and I visited a long-term acute care hospital (LTAC) this morning.  Yesterday the case manager gave us the names of three LTAC facilities in our area because an LTAC is a likely stop on Tobias' recovery journey.  We'll need to select one of them.  Two of them are close enough for consideration, but one is just too far away.  The first LTAC is located in the city next to where we are staying and we actually drive through the town on our way to the hospital.  We decided to leave the hospital earlier than usual last night so that we could drop by the closer of the two LTACs.  The second LTAC is located about halfway between my sister's house and my mother's house.  We decided to visit it this morning.  The case manager recommended that we swing by unannounced so that we could get a better sense of what level of actual care will be provided.  Both LTACs are similar.  The closer LTAC was less organized and seemed a lot louder, but we visited during their shift change so the noise level was understandable.  The nurse who gave us a tour left a professional and honest impression.  The rooms are single-occupant and large, and we can both visit Tobias from morning to evening.  Tobias can only have two visitors a day, however, which means that if Katja and I visit Tobias, our daughter, her husband, my mom and my sister may not see him that day.  The second LTAC looked to be better organized, but it is farther away. They have the same two visitors per day rule, but further complicate things by only allowing one person in the hospital at a time.  This means that Katja and I cannot be in Tobias' room together.  That is a KO criteria for us so I guess we have chosen the LTAC for Tobias.  It surprised us that neither LTAC requires their staff to get vaccinated, but they have strict visitation rules.  We support the visitation rules, but find it inconsistent to not also require staff to take all the medically approved precautions to protect their patients.

We are not in favor of Tobias leaving the ICU at the beginning of next week as the medical team is advising us.  We are working to convince the medical team to leave him here until he becomes more stable.  We know that the level of care will decrease at the LTAC and he still needs close care.  Today has been a bad day for storming.  His heart rate is again over 150 bpm for several minutes at a time before briefing dipping into the 130s and then returning to 150 plus.  His max heart rate today was 185.  His new nurse has not been able to keep him from storming.  She mentioned to us that she was trying to wean him off of the medication, but it seems to be too early for this because his body still races when the medication is reduced.  She also has the habit of someone who seeks to compensate for an insecurity by talking a lot.  This may be unfair to her because she has also shown us a lot of consideration and knowledge, but based on Tobias' condition, we feel that other nurses were able to keep him in a more comfortable state.  We have also been advised many times that there are several monitors on the floor that are continuously monitored.  I was told firmly, but kindly that I was not allowed to approach the nurses station on the floor for patient data privacy reasons, but when we push the nurse call button it can take 5 - 10 minutes for a nurse to come.  I wait three minutes and then go to the nurses' station.  Today when Tobias' storming was at its peak, the sweat on his chest loosened the EKG leads on his chest so it stopped reading.  I pressed the call button, but no one came.  I'm surprised that this wasn't picked up by the person watching the monitor.  I would have thought that the nurses would be aware of a patient with a 170+ heart rate and respond quickly if the heart-rate monitor stopped working.  In any event, I'm still a big fan of the nurses and doctors that have cared for Tobias.  Some are better than others, however, and whenever a human element is involved, something can go wrong so Katja and I are more determined than ever to stay at Tobias' side and try to educate ourselves in the difference between the important and the trivial so that we can advocate for Tobias' comfort and chances for recovery without becomes time-wasters for the nursing staff.

The doctor in charge of the in-patient rehabilitation hospital visited Tobias this morning.  He noted that Tobias shows more muscle stiffness than normal, likely due to his level of storming.  He prescribed a medication for Tobias to help reduce the muscle stiffness.  The occupational therapist gave Tobias a therapy session today as well.  She tried to visit him in the morning but left because he was storming too much.  She also noted during her afternoon visit that he was unusually stiff and difficult to work with because of the storming.  I have tried to help him move his joints a few times a day, but I've only had one day when I was able to work on him twice.  Most days I can't work with him because he is contracting his muscles similar to a slow seizure.  Working with him increasing the chances of more storming.

Today is the second-week anniversary of the bleed.  Two weeks ago about right now he was found collapsed on the floor of the bathroom, unable to move, but still speaking.  Fast forward two weeks and he still looks fit with bulging, toned muscles.  It saddens me to think that before this is over his muscles will atrophy and Katja and I both worry that if we don't get him more help in the next few weeks, his recovery will be made more difficult by the loss of muscle memory and decline.  The cave example that I gave yesterday is applicable.  We just don't know what is best for him so we listen to the doctors, research online and try to use our common sense to avoid pitfalls that await us if we don't actively seek to promote Tobias' condition. But it still feels like we are groping around in the dark.

The respiratory therapist put the T-piece on Tobias' trache this morning and removed the ventilator tube.  Tobias breathed on his own for 9 hours.  I think this contributed to his difficult storming because his body had to work harder to get the oxygen it needed through his lungs and brain.  It's good news on the one hand because it evidences that Tobias is recovering.  Mom and Dad worry on the other hand that it could be too much, too fast and put Tobias' body under stress that creates more harm than good.  We put our trust in the nurses' care and the doctor's guidance and ask lots of questions.  I think we have a reputation of asking questions and being involved in our son's recovery.  This is good, I guess, but we also heard that the medical staff was under the impression that we want to return to Germany as soon as possible.  We wonder what water-cooler talk happens and how that may affect the decisions that determine Tobias' care.  We have made arrangements to stay with Tobias for several months, if necessary.

Storming has been such a large part of the struggle that Tobias has faced over the past two weeks that I want to discuss it again.  I also received a request in the comments to describe storming.  Storming occurs after a brain injury when the brain loses the ability to calm the body down.  In a normal brain whenever a threat is perceived the body is flooded with "fight or flight" hormones, like adrenaline.  The normal brain can easily de-escalate the body chemistry when the threat is neutralized, however the injured brain can't turn off the "fight or flight" signals and the body is flooded with neurotransmitters telling the body that it is in trouble.  For some reason the brain can still produce the "trouble" chemicals, but not the "it's okay" chemicals.  The body responds by increasing the heart rate, the blood pressure, the temperature and sweat production.  When the brain continues to produce "danger" signals and no "it's okay" signals, the patient "storms".  Storming looks a lot like a slow seizure, but I learned today that the causes are different.  Seizures occurs when the electrical synapses are misfiring and storming occurs when the body chemistry is broken.  This may not sound all that bad, but the effects of storming are stressful to the body because of the high heart rate and blood pressure.  If not treated effectively it can lead to secondary brain damage and could be lethal.  The hospital has been very careful to monitor and treat the storming symptoms for Tobias.  They have seen worse cases of storming than Tobias is experiencing, however, we are concerned because it seems logical that a body can't be indifferent to heart rates over 150 for long periods of time and systolic blood pressure in the same region.

Tobias has been on a broad-spectrum antibiotic for several days.  He was running a fever of 38.5 C (101.3 F) and the doctors weren't sure if this was just a result of his storming or whether he had a bacterial infection.  The broad-spectrum antibiotic is meant to hinder the growth of a large variety of bacteria in an effort to gain time while the hospital identifies the exact bacteria.  Once the bug has been identified another antibiotic can be used to attack it directly.  It took several days to confirm that Tobias has some positive streptococcus cultures.  Luckily this isn't a serious issue and his fever has been held in check over the past few days.  We expect that he'll be bug-free soon.

The days are starting to blend together now.   Tobias was trending in a positive direction, but took a step backward today.  He has been storming so much that we don't touch him or speak to him as frequently as we used to, in order to restrict the inputs that his brain has to process.  More stimuli = more stress = more storming.  We are focused on the fact that he is alive and find purpose in being with him to ensure that everything is being done to keep him comfortable and give his body a chance to heal.  Logically we know that he needs weeks, perhaps months to heal, but emotionally we struggle to accept these time frames.  We know that he may emerge unable to care for his basic needs, but still be at least somewhat aware in his mind.  This is the outcome that we fear the most.  It reminds me of a study that I read about traffic accidents several years ago.  Researchers noticed that the skid marks on the road often led directly into a road-side pole even when the length of the skid and the distance between poles was great enough to have provided the driver ample opportunity to steer away.  After interviewing accident victims and simulating the decisions immediate to the crash, the researchers concluded that drivers were hitting the poles because they were most afraid of crashing into them.  Their fear caused them to focus on the pole as the accident unfolded and drivers tended to steer toward whatever they were looking at.  I'm going to take a lesson from this study and actively focus on where I want to steer Tobias' recovery rather than on what I'm most afraid of.  Sometimes one needs to look away from what one fears.  You read this entire blog to get an update on Tobias, but you've ended up with a valuable driving tip and handy life hack!  Focus on what you want to steer toward, not on what you are afraid of.

Hope over fear.