Day 19 (Sep 13)

Bottom line: Today was another calm day for Tobias. We expected him to move to the acute care ward ("the floor") from the ICU today, but he stayed put and we didn't ask any questions. He stormed frequently, but lightly. His heartrate was below 135 every time I checked. The doctors are testing him off of the ventilator indefinitely. Often it takes a few runs at weaning off the ventilator for the lungs to get strong enough. Tobias has not responded to the request to raise his thumb for two days, but the doctor isn't concerned about Tobias' loss of responsiveness. She believes that the lack of brain stimulant medication is the reason for the drop in responsiveness. The brain stimulant was nixed because it was contributing to the severe storming. The medical team wants to follow at least a few more days of the "anti-storming" approach before starting Tobias back on the stimulants. We are now in the period of "wait and see" to give Tobias' brain time to come back online.

Detail: Tobias is a first class Trypanophobe (I had to google that one.) He has always been terrified of needles. I took him for his flu shot in grade school and almost had to wrestle him to get his shot. As a nineteen-year-old he was bitten by a stray dog in South America and needed to get a series of rabies shots. He understood that if left untreated, he was risking death, but he still required the insistent encouragement of a good friend to get all the necessary shots. I wonder if he will emerge from this experience with his trypanophobia intact, or whether the fact that most of his needle real estate has been checked, used and repaired will break the curse. I think he will still be antsy about getting poked.

 
It felt good walking out of the hospital last night because I was confident that I would see my son alive the next day. He probably has been out of mortal danger for several days now, but it didn't feel that way until last night. Nothing new happened, but Katja and I are still dealing with some shock from the first few days of the injury. It has taken us a while to feel confident in Tobias' condition. The first few days were just as horrible as you might imagine. I would hear the frank assessments from the neurosurgeons and worry that I might be touching my son's arm for the last time while it is still warm. He has been resting more and the swelling in his brain appears to my untrained eyes to be receding. This is great news. However, we are concerned that he is no longer responding to verbal requests like "move your thumb" or "wiggle your toes". When he first emerged from the initial trauma we were overjoyed to see him move his thumb. It seems strange to me, however, that he could only move it once. If asked again 5 seconds later, his thumb remained unresponsive. For the next few days he would comply with a thumb wiggle two or three times a day, but never consistently. His pupils were likewise intermittently cooperative. Sometimes they would react to light, but mostly they didn't. We were excited because one of the senior residents told us that patients usually retain their pupil reactions once acquired and then disappointed when Tobias' pupils stopped working as expected. "The brain waxes and wanes" we were told. "One step forward, one step back". The loss of responsiveness may be due to the storming that set in and quickly grew more fierce. It may have disappeared because of the medication that has been used to relieve the storming or the removal of the medical used to kick his brain into action. We don't know and we aren't sure if anyone does. 

We thought Tobias would be moved out of the ICU to "the floor" today. The head neurosurgeon for Tobias indicated that Tobias should move to the Neuro-acute Care ("the floor") on Sunday or Monday, but today the nurse confirmed that no move order was discussed in the morning rounds. We hope this means that the providers heard our concerns and are giving Tobias a short extension to the higher level of care of the NCC ICU. We are worried that they are keeping him here because of the unusual loss of pupil and thumb responsiveness, which may indicate a problem. The real reason for his extra time in the ICU might be as mundane as the hospital bureaucracy is taking longer than usual to generate the move order. The nurse today is one who we know from earlier and she is one of the best who has looked after Tobias. She told us that a procedure was discussed called a "lumbar draw", where the neurosurgeon takes spinal fluid out of the lumbar region of the spine. In Tobias' case, it would be to test it for some infection that may be causing Tobias' drop in responsiveness. This was discussed in the rounds, but was discounted for the time being and they are going to continue to just observe Tobias. 

Tobias has continued to make progress with his breathing. He breathed without the ventilator for 24 hours from Saturday to Sunday. On Sunday he was given a short reprieve, but this morning he is back on the T-piece, which observant readers will recall is the device that provides access to humidified, oxygenated air, but no breathing support. I asked the respiratory therapist how long they are targeting to keep Tobias off the ventilator and he responded that the doctors want to keep him off the ventilator for good, if possible. He is being monitored and will only go back onto the ventilator if he runs into trouble breathing. His vital signs are excellent right now and his storming episodes have been mild. His HR is 100 to 120 and his BP is 105. His respiratory rate (RR) is in the mid-20s. In prior breathing tests it hovered around 30 and could reach the mid-40s. I'm relieved to see his pulmonary progress. One of the issues the case manager mentioned when discussing Tobias' next station was that he would have a harder time getting a bed in the acute care unit in the hospital if he were still on a ventilator. The spectre of Covid has raised its ugly head again and could cause another problem for Tobias. Because of all the Covid cases in the hospital, the respiratory therapists are overburdened so the ICU has agreed to minimize the number of patients it sends to the floor requiring a ventilator. This could push Tobias directly to an outside facility, which we are concerned won't have the same level of care as the hospital. At a minimum it will cause a break from the doctors who know Tobias' prior care and history. I know that immunization has become a political issue, but in this case I feel that it's important to recognize that vaccinated people are much less likely to get sick and when they do they are much less likely to need hospital care. Due to the large number of Covid patients in hospitals, the health care system has become overburdened. I read an article yesterday reporting that a man died of a heart attack because no hospital was able to take him. Our first hand experience is that Tobias' condition would have been much better if he didn't have to wait over an hour for a life-flight when the pressure in his brain was building. It's not a political issue for me. I relate better to facts than political rhetoric. When hospital rooms and attending nurses are overburdened by the number of Covid patients, people who need critical care will not have ready access to it. When this overburdening of the health care system could be avoided by reducing the demand for care by increasing the number of vaccinated people, it makes sense to encourage more people to get vaccinated. If you haven't been vaccinated, please consider doing so to protect yourselves, your family, your community and, by extension, my son. 

Just spoke with one of the top neurosurgeons caring for Tobias. I asked what may be responsible for Tobias to be responsive shortly after the injury and to be no longer responsive now. I also asked whether his low blood pressure is a concern. She gave Katja and I very good responses that made us feel better. She is correlating the lack of responsiveness with the elimination of the brain stimulants that I mentioned in a prior post. These medications kick the brain into gear which promotes responsiveness, but is also linked to higher storming. The stimulants were taken off his menu when he was storming large portions of the day at 160+ beats per minute. I asked if there could be any other factors causing the change, but she didn't feel that anything else would be probable. I was concerned that somehow some brain tissue had continued to die, but she confirmed that the latest CT scans showed no more deterioration. The issue of an infection in the spinal cord is unlikely and not supported by the existing test results. The low blood pressure is a result of the new medication to counteract the storming symptoms. She was expecting the BP to drop and is comfortable with its current level for a patient with Tobias' age and level of fitness. She was very happy to see Tobias resting so peacefully and wants to give him a few more days before starting up with the stimulant medications again. Storming is usually a temporary phenomenon and we will hopefully have Tobias past the worst of it soon so that he can get his brain stimulated enough to see his thumb waggle again.

One of the reasons that we are anxious not to leave the university hospital is that collaboration that occurs between the various disciplines will stop. We received a visit from one of the residents from the rehabilitation hospital who wanted to make an assessment of Tobias' condition to feed back to the neuro-team. We are worried that this cross-functional approach to Tobias' recovery will stop if he is in a long-term acute care facility. We had an interesting discussion with the rehab doctor because he sees patients during a different section of their recovery journey. The neurosurgeons are experts at putting the brain back together while the rehabilitation doctors are experts at healing the brain and body after the injury. The rehab doctor explained what condition Tobias would need to be in to enter into the rehab hospital. He would need to be able to actively participate in three hours of rehab a day, but even more importantly, he needs to "wake up" to show that he is aware of his surroundings. Tobias has opened his eyes, but he hasn't been tracking objects. He has been able to move his thumb, but not consistently. He can move his arms in response to pain, but not purposely. He also reassured us that it's okay for Tobias to be medicated primarily to treat his storming and not to worry about his lack of responsiveness right now. There isn't a window of opportunity for Tobias to rewire his brain that he is missing out on. The rehab doctor said that there is some correlation between swelling in the brain and its cognitive ability. This seems logical and is why we are hopeful that time will help reduce his brain swelling, eliminate the storming episodes and restore him back to us.

I've been asked if our lives over the past two weeks have been like a roller coaster. The assumption, of course, is that there are ups and downs. I think that this is very unfair to roller coasters. Roller coasters are fun on the ups and the downs, where this experience is really only fun when the terror stops and you are grateful that you are alive and that the ride is over. If you would have asked me three weeks ago whether the best part of my day would be when my 21 year old son gave me a thumbs up, I would have had a different appreciation than I do today. I think a better amusement park analogy for this experience is the ride that spins around so fast that when the floor drops out the bodies stay pinned to the sides. I have ridden that ride exactly one time. This experience is like being locked in place on that ride. When the ride is spinning, I feel my insides being moved unnaturally about and my eyes feel like they are trying to press their way to the back of my head. It's hard to focus on anything but the immediate concern of holding it all together through the next few moments. Priorities become very short term. Finally the spinning stops and I'm incredibly happy that I didn't fly apart and that the world is still there where it's supposed to be. I'm able to see that there is some good in the world after all and more is possible, but I'm concerned about the ride spinning up again.

It would be ungrateful and self-absorbed of me not to recognize the good that has floated around us and buoyed us up when things looked dire. We continue to be supported by friends and family in almost unrestrained measure. We appreciate the kind messages and offers of help. It makes a difference for us that people continue to check in with us. It would have been much more difficult had we been alone. You have helped us know that we aren't alone. My family has taken us in and continues to provide emotional and logistical support. My work colleagues (and manager) have shown a degree of concern, understanding and outreach that has touched my heart and made me grateful that I get to work with them. We are lucky that we happened to bring all of our kids on this vacation so we have enjoyed the support and care of our children and our truly outstanding son-in-law. I've received several messages that contain something along the lines of "don't want to intrude" or "don't know what to say". My advice to you when you know someone who may be in a difficult circumstance is to just make sure you "show up" for them and be counted. Show them that they are not alone. The words you use don't really matter. For us it has been the reassurance that we are cared for and supported that has made the biggest difference. We continue to have ups and downs and we do not know when or how Tobias will emerge from this forest he is lost in, but we are more confident in our ability to support him due to the friendship and concern for us and him that you have shown us.

There is another secret weapon against discouragement that we have deployed with abandon. Her name is Eloise and she is our granddaughter. With her mom's permission, I'm including a few images of her to showcase her super power to make grandma and grandpa grateful for the beauty in a world that can also be so cruel.

Hope over fear.