Day 359 - Update and reflections on a Post Malone summer

In less than a week we'll see August 27th again.  That was the date last summer when Tobias collapsed at the home of my sister in Brigham City, Utah with a massive brain bleed.  911, ambulances, firetrucks and a life flight to the University of Utah hospital ensued.  One week ago Friday the rehab hospital in Brandenburg, Germany discharged him into our care at our home on the outskirts of Berlin.  Tobias spent two weeks shy of a year in various hospitals in the US and Germany.  First in the neurological ICU at the University of Utah, then at the acute care unit for a few weeks before entering rehab at the Nielson Rehabilitation Hospital, also part of the U of U hospital complex.  In December Tobias and I were the only passengers on a Leerjet 45 outfitted as a flying hospital room.  Three stops later we touched down in Berlin and Tobias started his tenure at hospitals and rehab centers in Germany.  Now, almost nine months after his transfer to Germany, he's finally home and although our journey together on the path to his recovery feels like it has been very long, we are still at the beginning.

Our home routine suits Tobias well.  He was probably too long in the rehab hospital in Brandenburg to be honest.  I don't mean to fault the care there, but looking at how Tobias responded to being back home, it's clear that he was weary of the hospital environment.  Unfortunately one only gets to learn some things by comparison and we couldn't have guessed that he would respond so well to being back home and away from the hospital care and therapies.  Despite the high level of care and caring that he received, staying too long in an otherwise helpful place can turn out to be unhelpful.  In economics I learned that a customer enjoys eating the first hamburger much more than the fifth.  The law of diminishing marginal utility apparently works for patient rehabilitation care as well as for hamburgers.

Tobias at home is more relaxed than he was in the hospital.  He smiles more, laughs more and engages with us more frequently.  He is less tired and shows better stamina.  He will continue to have outpatient therapies, but these don't start until next week so he's had a reprieve from the stresses that therapies put on his mind and body.  We have a pedaling exercise machine at home that he works on and we have him walk with our support as much as possible, but overall his physical and mental exertion is less with us that it was in the hospital.  He must also be sleeping better in his room at home than in the hospital surrounding by blinking lights of various colors with nurses checking in on him at all hours.  His light sleep probably suffered under the well-intentioned care.  Katja and I are both doing better based on his improved demeanor.  The other day Katja had laid him out on a blanket looking up at the sky because the wheelchair sitting had become uncomfortable.  Our nearly two-year old granddaughter was visiting and when she saw Uncle Tobias lying on the ground she looked at me and said "sleeping".  I told her to act like she was sleeping too and I placed her on Tobias' chest.  She stretched her arms out to both sides of Tobias and lay very still as she pretended to sleep.  Tobias lifted his right arm and cuddled her close.  His countenance beamed and he smiled as broadly as he was capable while gazing down at the soft toddler giving him love.  It wasn't very long ago that I worried that Tobias would never be able to experience moments like this, or at least that we wouldn't be able to recognize that he was feeling joy or happiness.  In the past we've seen him laugh, smile and make jokes so we know that he is able to experience joy, but seeing him respond so tenderly and with just obvious emotion to our granddaughter expanded my understanding of what he is capable of feeling and expressing.

Tobias' will to recover is ambitious.  He always wants to do more than he is physically or neurologically capable.  His desire sometimes surprises me.  He seems exhausted, but if I asked whether he wants to be pushed in the wheelchair or walk, he rarely chooses wheelchair.  Walking with Tobias consists of standing on his left side and putting his left arm around my back, which can be difficult because he can't move his left arm and it is sometimes stiff and "chicken-winged".  Once his left arm is behind me, I reach my right arm around his back and hold his right hip.  I can pull him in tight so that his left and my right hips are pressed together firmly so that I can hold him upright by cantilevering his weight off my hip.  He often uses a crutch/cane with his right hand that encases his forearm and has a handle for his right hand to hold.  Between the cane and my help he has the support he needs to take a step with his right leg.  After he steps, he can hold himself up with his right leg as long as I provide balance.  I can then reach down and swing his left leg forward.  His left side is still effectually lame.  Both Katja and I have seen evidence that he can cause tremors and sometimes a slight wiggling in his fingers, arm and leg, but he can't yet use them for anything.  Despite the difficulty and effort required for this style of walking, Tobias always chooses to walk. Even at the end of the day when moving his right leg is slow and onerous, he wants to walk.

One of the difficult aspects of Tobias' injury in the beginning was the absence of a reliable prognosis.  We were told that every patient is difficult, that the brain is a mystery and that everything would take very long.  We were also told that many patients reach their new normal in a year's time.  This last generalization has caused me some concern because, if it holds true for Tobias, we are far away from what I had hoped his new normal would be.  His speech has improved in the last few weeks, but he still doesn't "speak".  His words are usually delayed, belabored and unclear.  He suffers from an inability to hold focus.  I've experienced this myself when I'm tired and while undertaking some mental task, I find myself staring off somewhere realizing that I've lost my train of thought.  This happens to Tobias every couple of minutes, except he rarely can break the trance by himself..  He needs to be frequently reminded to resume the task at hand.  It's classic for him to lift a spoon of food to his mouth, but then stop mid-motion somewhere along the way until he is prompted to continue to eat.  He also suffers from the inability to form new memories easily.  He can't remember anything that has happened from a few minutes ago.  We got him into an online chat with a group of his friends and he kept typing the same initial message, because he had forgotten that he had already written it.  Oddly, however, he does remember some things.  He recalls a few of the nurses from the rehab hospital, although he doesn't remember being at the hospital.  He does show signs of improvement, however.  Today while eating lunch I saw him tuck away a half eaten sausage in the bottom part of his bib while he used his hand to complete a separate task.  I was happy to see that a few minutes later he opened the hidden part of the bib where the sausage was concealed and finished eating it.  He remembered the sausage.  Yea!  He has struggled to chew and swallow since his injury, and although he still needs to receive calories through the feeding tube in his stomach, he is better at swallowing and he has started to feed himself more reliably.  His motions still get stuck and he requires our guidance to continue, but he is better at eating that he was a month ago.  We still don't have a solid prognosis for his recovery, but at the beginning of Tobias' injury, we couldn't see more than a step or two in front of us on this journey.  I think now that we can see further up the hill, but we still don't know where the path will end up and we hope that Tobias will continue to improve past the one year mark so that he can again live an independent life of his own choosing.

Taking care of Tobias is a large undertaking.  It is rewarding that he can communicate better than a few months ago.  We can usually ascertain what is hurting him or what he would like to do, but he is 100% reliant upon us to feed, change, bathe, clothe, medicate, entertain and provide for his bodily comfort.  We have to monitor his digestion so that we can intervene if he isn't on track.  I'm uncomfortable leaving him alone, even for short periods of time, because he can't move or call for help.  If he slips out of his bed or chair or develops a painful discomfort, he can't let us know unless we are close at hand and check with him.  Katja is the saint in this scenario and provides the larger share of his care since I work full time.  It's daunting to imagine this level of care for Tobias for the rest of our lives and one of my chief concerns is how to provide for Tobias when we reach the point when we are physically unable to care for him or how he will be cared for when we are gone.  Luckily these are concerns that don't require a quick solution and we will have time to work out what is best for Tobias, let alone potentially help him reach a state where he can care for himself.

As I think about the anniversary of Tobias' injury, my heart and mind are disquieted.  I'm not at peace with what happened to him and I still feel the loss of my son.  My thoughts rush back to the first days and weeks where the shock threatened to overwhelm me and, I think truly, the only reason I was able to function competently is that I had no other choice.  This week I intentionally listened to some of the playlists that we played for Tobias while he lay incommunicative and oblivious to the outside world.  I was reminded again how precisely music has the power to retain memory as the songs put me back in the ICU looking over my son, close to death and storming with a broken, errant nervous system.  I remember also the reaching out of family and friends to stand with us and share our burden.  I remember seeing beauty in the natural world and finding a measure of peace through the feeling of gratitude.  I remember listening to music that deconstructed me with its power and tension, but then put me back together with melody and harmony leaving me strengthened in the process.  I remember the flood of tears as my body tried to help my heart process what it did not want to accept.  I remember the strength I felt from realizing that best way to help Tobias was to spend my energy in positive activity and not feeling sorry or searching for answers to why this happened.

Tobias has come a long way since his ICU days and even from the first days of his rehab in Germany, but we still have such a great distance ahead of us for Tobias' return.  We are grateful to be travelling the road together and especially grateful that Tobias can now point out some of the features of the journey along the way.

Hope over fear.