Day 10 (Sep 5)

Bottom line: Today was a bad day for Tobias.  It started well but he started storming mid-morning and couldn't shake it off.  His heart rate was especially fierce and cycled up and down despite new medication.  His reactions were poor today, but he did have an angiogram, which showed that the vasospasms in his brain were reduced enough that the doctor was able to remove the port in his groin so he will now be able to sit in a more comfortable position in bed.  We continue to receive messages of love and support from everywhere that we have lived and despite this tragedy, we count ourselves lucky to have made friends with such wonderful people in each chapter of our lives.

Detail:

Last night when I crawled into bed I had to stop and remain still for a moment because I felt guilty that I was able to move physically into a soft bed while I knew that Tobias remained almost completely motionless in his uncomfortable confinement.

As Katja and I drove to the hospital this morning I played music from my phone through the car speakers.  This is the first time that I felt it was okay to do something that might count as entertainment.  Up to this point I have had an aversion to music, videos, TV, restaurants or social chats.  Given the gravity of the Tobias' situation, entertainment felt irresponsible to me.  I felt like I needed to be fully focused on getting Tobias back to us and I didn't want anything to distract me from this one mission.  We have other kids and responsibilities that we have tried to be present for, but these feel different from entertainment.  While Tobias is in the space between life and death I didn't want to do anything just because it was fun.  On the way to the hospital today, however, I wanted to listen to music.  I found the Magic Flute opera by Mozart on my phone and put it through the car stereo.  The Magic Flute is beautiful, but I chose it because my dad, who died from a brain aneurysm in 2002, loved opera and I wanted to reach out through time and space to connect with my father to draw on his strength and love for the coming hours, days, weeks and months.  I also chose it because at one point in the story the protagonists need to prove their devotion for each other while one of them remains silent.

Earlier this morning I called the hospital to get an update on Tobias.  The nurse caring for Tobias kindly offered to give us an update at any time so I called at 5am to see how he fared overnight.  The nurse reported that his night passed well, but that he had started storming forcefully at about 1 AM and the attending neurosurgeon prescribed a new drug that is specifically suited for the effects of storming.  I asked why this drug wasn't used earlier and was told that the process of dialing in the right medication involves stepping slowly from drug to drug and dose to dose so that they give each new application a chance to work.  Tobias' storming has been severe enough that they have moved him to a stronger medication.

The new medication seems to have worked well because Tobias was resting peacefully when we arrived at the hospital.  His restfulness lasted for two hours or so before he started storming again and his heart rate and blood pressure jumped up to 160 bpm (beats per minute) and 180 mmHg (millimeters of mercury) respectively.  This is the most difficult condition to see him in.  His body convulses slowly to the rage going on inside him with his arms moving slowly toward his face and then back down to his sides.  He can't reach his face because he is restrained at the wrists to protect from him inadvertently removing his breathing tube or any of the other lifesaving tubes and lines puncturing his body.  His shoulders rotate his elbows and his palms out and his fingers cramp together tightly in a tangle.  His face shifts to a hard grimace and the muscles in his arms, chest and legs flex hard in a sustained shiver for usually about one minute.  It must be stressful, confusing and painful for him and there is nothing we can do.  If it persists for too long the nurses dose him with a pain medication or a sedative, but often this is unnecessary as his body slowly relaxes and he returns to a restful state for a few minutes before the next episode.  For the past few days these episodes can occur every few minutes for about 30 minutes to an hour.  The nurse explained that every patient is different, but that storming usually occurs the strongest in young males.  It must be that the potential to create adrenaline is at its peak with this demographic, but the brain needs to learn how to turn it back off before the storming can subside.

It's been a rough day for Tobias.  Once he started storming he hasn't been able stop.  He has an angiogram scheduled for today to check the condition of the vasospasms and hopefully he'll be in good enough shape that the angiogram port in his groin can be removed so that he'll be able to sit in a more comfortable position.

Fast forward two hours and Katja and I have had lunch and Tobias' nurse returned him from the angiogram.  The nurse reported that he was a little stormy during the procedure, but that he did well.  The doctors removed the angiogram port so it must mean that they are happy with the behavior of the vasospasming arteries in his head.  I'm looking forward to seeing the angiogram with one of the neurosurgeons.  His storming has come on more violently since his return from the procedure, however.  Katja and I discussed going for a walk to get some fresh air, but I felt more comfortable being with Tobias.  I'm really glad that I came back to the ICU because I was able to support Tobias as he went through a rough storming episode.  We often sit on a couch that is set back against the window in Tobias' room.  The shade has always been pulled down in order to provide less light stimulus.  The lights in the room are often turned down low as well for the same reason.  From the couch I can see the back of Tobias' head, but I can't see the monitor with his vital signs.  I had just given Katja an update on Tobias and reported that all is well.  The nurse heard the conversation and didn't say anything.  A few minutes after I hung up, I heard Tobias breathing so fast that it sounded like he was hyperventilating.  I've never seen this before.  The nurse continued to untangle the cords and get Tobias hooked up, but she remained quiet.  I got up to check on Tobias and grew very concerned to see the heart rate at 190 something.  I just remember seeing the 19x and taking note that the ones digit was changing so quickly I couldn't clock it.  I noted the high heart rate and the nurse nervously confirmed that it was correct and said that she had given him something for it.  My hands were cold so I didn't want to touch Tobias' skin so I put my hand on his hospital gown over his upper arm and started talking to him in a low calm voice that I didn't feel at all.  "Everything's okay, Tobias.  Dad is here with you and I'm going to stay with you.  We'll get through this together.  There is no danger and you should tell your brain to let your heart relax.  You're doing great.  Just relax."  This was all actually true, but it didn't feel true.  I was nervous to see Tobias in a weakened state with a heart rate of almost 200 and I briefly thought about whether this is what it would feel like right before my son's body gave out.  The nurse, I found out, is very new in this job and I was glad when she went to get a more experienced nurse for help.  She came back immediately with backup.  The backup nurse was very calm and told me that this was not a dangerous situation for the short term.  He said that he has seen heart rates of 240 bpm during violent episodes of storming.  The nurses finished getting Tobias' tubes and lines sorted and turned all the lights off to reduce any potential stress that they were causing Tobias.  I decided not to speak with Tobias or touch him anymore in case this was causing him more stress.  I told him that I was still with him and why I wasn't touching him or speaking any more and went back to the couch to sit in nervous confidence that the nurses were correct.  My heart rate can get up to 170 when I'm doing heavy aerobic exercises so I was pretty sure that Tobias' younger, fitter heart could deal with a short burst at 190, but it made me nervous and I was second guessing my trust in the nurses all the time because of the off chance that something could happen to Tobias due to my inactivity.  I was a little more comfortable to see that despite the racing heart, his blood pressure never got above 130.  The nurse sought out the opinion of the attending neurosurgeon who approved a small dose of medicine to directly counteract the excessive heart rate.  Tobias' heart is now beating fewer than 140 times a minute and he appears to be sleeping.  I'm watching over him, but being careful to let him rest.  I'm afraid this will be a frequent occurrence for the next several weeks.  It causes stress to see Tobias in this situation, especially when the temperature alarm is triggered and then an IV starts to run low and an even louder warning alarm goes off while we're trying to understand if this is normal or a "stand up and get help" moment.  When Tobias breathes too deeply or too shallowly the ventilator makes a loud sound like a horn blowing that is always startling.  I feel for the doctors who have to manage patients, each of whom reacts differently to the standard procedures and medicines.  The doctors have to find the right mix of medication to optimize the heart rate, blood pressure and temperature.  Symptoms can change quickly for a patient, but interventions need time to take effect.  They now have Tobias' heart rate in an acceptable, but still elevated range, at 130 to 140, but the blood pressure is very low at 110/55.  His temperature is high at 38.5 (101.3).  I can see how easy it could be to get on the wrong side of a wave with a patient's vital signs and getting them back to safe levels can be tricky.

Tobias was storming so much that he was unresponsive and I couldn't do any joint or muscle movement with him.  Moving his limbs can create a fight or flight reaction that would make his storming worse so I have to wait for his vital signs to be in a good range to work with him.  I noticed that his heart rate was going up and down with regularity so I spent about 30 minutes writing down his heart rate, blood pressure and his breaths per minute (respiratory rate) every 30 seconds.  The graph below shows why storming can be difficult for Tobias and difficult for his parents to watch.  I found it interesting that all his vitals signs are highly correlated, which makes sense, and I was surprised at how large the swings in his heart rate were and how quickly his heart rate went up and down.  You can see in the graph below that his heart rate cycled up and down by 30 beats per minute in two minute increments.  This is storming.

We continue to receive love and support from all over.  We appreciate all of it.  I had a friend who drove two hours to the hospital not knowing if he and his wife would even find us because he didn't know what to do and just wanted to "show up" for us.  We have friends contacting my family to find out if there is anything that we need, but are too shy to ask.  Katja's friend in France learned about Tobias' situation after returning from a retreat with French Catholic monks.  She contacted the monastery and now there is a cadre of French monks praying for Tobias.  I think actually that we have several religions praying for Tobias and many non-believers sending us their love and positive energy.  It would be much harder to face a challenge like this feeling isolated so thank you to everyone who has contacted us or thought about Tobias in your own way to send him your love and support.  You have made us feel loved and part of a larger community.