Day 34 (Sep 28)

Bottom line: Today was middling.  Tobias stormed once, but was peaceful for most of the day.  He had a good therapy session in the morning, but was wiped out by the medicine or the storming and couldn't keep his eyes open after the morning storm.  Katja and I met with the doctor and his team for a "family meeting" which helps to allay our concerns and make us comfortable with the decision to have Tobias treated in the rehab hospital.

Detail:

We arrived at the hospital today at 10am because I had a work meeting that ended at 9am.  By the time we arrived the physical therapist and occupational therapist had already done a joint therapy session with Tobias.  They reported that he was alert, flexible and able to perform many of the tasks that they set before him.  He tracked with his eyes and tolerated sitting up without setting off any storming episodes.  He was back in bed sleeping peacefully when Katja and I arrived and we cautiously looked at each other with the hope that today would allow him to rest and stay alert for his therapies.  Approximately five minutes later he started storming.  This could be a coincidence that we had arrived inopportunely or it could be that we set it off.

At the age of three, children in Germany start Kindergarten, which is a state-run nursery program to prepare children for primary school.  Tobias started Kindergarten in the village where we lived near the Swiss and Austrian borders. This area is an idyllic setting in southern Germany with castles and cobblestone.  The local dialect is distinct and delectable in equal measure.  Tobias soon picked up the accent, but I only got to hear him speak the local tongue when he was with his friends since we spoke English at home.  Those were magical years and it pains me a little to think that this time is gone.  Parents have the option to join their children in Kindergarten occasionally and I was highly surprised on my visitation day to see the confidence in which Tobias greeted his stern (and a little scary) teacher with a cheerfully boisterous "Guten Morgen, Frau Geiger".  She responded in equal decibels with a locally flavored "Guten Morgen, Tobias".  This moment in time charmed me so thoroughly that I have mimicked Frau Geiger's friendly salutation ever since as my preferred greeting for Tobias.  I thought I was doing Tobias' brain a favor by firing off a familiar Frau Geiger greeting for the past several days as I entered his hospital room.  Today I learned from the doctor that sudden loud noises can set off an episode of storming.  My loud greeting may have started his morning storm.  Needless to say I'm holding off sending in my "Father of the year" application until at least 2022.

We also learned from the doctor that storming is usually the amplification of a pain or discomfort signal that can't get turned off by the brain.  The pain signal arrives in the brain.  It gets interpreted and an oversized "flight or fight" signal is sent to the body which releases the body chemistry that drives up the heart rate, blood pressure, breathing and sweating that are the calling cards of a storming episode. As long as the pain signal continues, the amplified threat response continues.  When the pain or discomfort is alleviated, the storming will normally stop.  This comforted me because the morning storming session lasted for over an hour and reached heartrates of over 150.  I did not continue to greet Tobias at the top of my lungs so there is a good argument that the storming was caused by something else.  That's what I'm telling myself.

Katja and I have tried many things to help Tobias cope with his storming.  One needs to remove the root cause of the storming (the pain signal) and one can alleviate the symptoms (high heart rate, etc.).  We've determined that body heat is a contributing factor to higher levels of storming and may be one of the agents creating a vicious cycle to exacerbate the storming.  When Tobias is storming we try to keep the sweat off him with a wash cloth and we noticed that since he tends to bury his head to the left when he is storming that he is trapping a lot of heat on the left side of his face.  I gently straightened Tobias' head to a neutral postion so that he wasn't leaning left or right and put a wet wash cloth folded to a fourth of its original size over his ear.  The washcloth covered the ear and some of the surrounding area.  Immediately the heartrate started to drop.  It continued to drop by a beat at a time for about 15 or 20 seconds when the heat from his head and the temperature of the washcloth reached equilibrium.  At that point the heartrate leveled out again and slowly headed back up.  As long as I re-applied a freshly wetted washcloth to his ear, the heartrate dropped.  I repeated this experiment for 15 minutes until the storming episode ran out of steam and his heartrate stayed in the 100 - 110 range.  I was surprised how well this treatment worked and was happy to confirm that it worked again when the storming started a few minutes later.  Eventually it didn't have the same effectiveness, but it always took the heartrate down a few beats.  The doctor believes that the cool washcloth may have been able to address the part of Tobias' brain that was overreacting to the pain signal or it could have been eliminating the pain or discomfort signal that was coming from the excessive body heat.  It may have been a solution to THAT storming episode or it may be a trick to use in future storms as well.  We are learning that his storming has particular causes and we may be able to treat some episodes effectively by removing the pain stimulus or by effectively treating the symptoms.  Beware storming provocateurs.  You have been warned.  We are now on the lookout for you and you will be aggressively hunted and eliminated. 

Since the morning storming, Tobias has been stripped of his hospital gown and pajama bottoms.  The nurses removed the "binder" that stretches around his torso to protect the peg tube entering his abdomen to provide a path for the food being pushed via syringe into his stomach.  The peg tube still needs to be protected from Tobias' involuntary arm movements so we covered his stomach with a pillow and put his arm on top.  We have removed any unnecessary noises (no David Attenborough and no Downton Abbey) and tried to provide a calm, relaxing atmosphere.  Tobias has remained cool and calm.  His heartrate reached the low 70s and has topped out at 112 when he experienced some mild storming.  We placed a wet washcloth over his head and are happy that he has remained relaxed.  I have not tried to work any range of motion exercises with him to avoid instigating any storming.  This was a quiet day, with the exception of the morning episode, and we needed it.  It's important to observe Tobias closely to detect any source of pain or discomfort that he may be experiencing.  The biggest concern for the doctor is skin breakdown, which makes repositioning Tobias every two hours critical.  The doctor also spent time going over Tobias' toenails and fingernails to look for an ingrown nail.  So many things we handle subconsciously to alleviate pain in our day-to-day lives, but Tobias needs someone to recognize these small, but troublesome problems since he has no voice and virtually no reflex. 

In order for Tobias to make better progress, he needs to participate more actively in the therapy.  One critical element is to eliminate the storming, but the other element is to keep him awake.  The two are likely related since storming must be exhausting.  This afternoon at 2pm his joint session with occupational therapy and speech therapy was pretty dull because no one could get him to open his eyes more than a tiny slit for a few seconds.  They might as well have been practicing on their therapy dummy.  

At 1pm we had our first "family meeting" with the doctor and all related disciplines.   The meeting was scheduled for 45 minutes, but went 30 minutes over due to the number of questions that I asked.  The doctor explained the brain bleed to us again and showed us the MRI of the brain showing the damage to the hypothalamus.  It's the part in the middle of the brain glowing white in the picture below.  The hypothalamus acts as a switchboard in the brain.  It received pain messages and forwards them on to the body for action.  My summary of the doctor's explanation is that the hypothalamus is like the switchboard has a renegade operator who is causing havoc by ringing everyone with stress messages and the manager, who should normally tell the operator to knock it off, is weak and can't get their message across.  He thinks the hypothalamus is not permanently damaged, but may take some time to settle down.  Tobias' bleed was massive and impacted not only the right size of his brain where the bleed occurred, but also the left side because the pressure exerted force across the median.  The doctor wasn't pessimistic, but it was a sobering reminder that Tobias has a long, uncertain road ahead of him.  The doctor explained that the damage in Tobias' brain has caused some parts to stop functioning and now other parts of his brain are trying to pick up the slack and rewire themselves.  This causes problems for Tobias because the brain functions can fail when the sender cells, pathway or receiver cells are damaged or destroyed.  It will take a long time for Tobias's brain to sort itself out, but this is why we feel lucky to be in the rehab hospital where he is receiving more aggressive therapy that he would in an LTAC setting.  During our meeting Katja and I addressed our concerns that the level of care in the ICU and NAC seemed to be more appropriate for Tobias than the care we have seen in the rehab hospital.  This was a tricky conversation, but it was taken well by the doctor and the nursing staff and their answer helped to quell our concerns and reconfirmed our belief that Tobias is in the right place.  In short, they have allowed us to request extra vital sign measurements, for example measuring Tobias' blood pressure when he is storming instead of only measuring every four hours, and we have a better understanding why it is appropriate for the nursing staff to not apply the boots for large segments during the day.  We will continue to watch over Tobias and learn what care is necessary for his well-being.

Tobias' hypothalamus (light region in the middle of the brain) shows damage

I wouldn't say that we went uphill or downhill today.  It feels to me like we leveled out.  Tobias experienced one storming episode in the morning, but rested peacefully for the remainder of the day.  He had a good therapy session in the morning, but didn't stir for the second.  The discussion with the doctor and support team during the family meeting was constructive and cathartic.  We feel good about the decision to place Tobias in the rehab hospital.  Over that past few days doubt confronted us and Katja questioned whether Tobias was on the right path.  It has been difficult in the best of times over the last several weeks, but we struggle to find comfort when Katja and I feel differently about important topics.  I am comforted when the facts make sense to me.  Katja is comforted when the emotions make sense to her.  We have never had to walk so perilously close to significant and meaningful loss, and while the doctors are trying to find the right path for Tobias, we are searching for the path that reassures both of us that we are staying as far as possible from the edge.  There are times when we diverge, but there is safety and security by holding together and the repetition of divergence and reunion is strengthening our bond.  Union is much stronger.

Hope over fear