Update from Tyler - March 12th 2022

 

Tobias has continued to make slow progress.  In fact, I think he has advanced more than I have in this period.  He is speaking words and short phrases with better clarity and frequency and his movements have become more consistent.  On the other hand, I still battle, many times unsuccessfully, with a wave of emotion when I see a picture of his former glory or experience his condition first hand and realize the vibrancy of life that we have all lost.  I'm with Tobias today and he is napping in his bed, giving me a chance to cobble together a blog post that is long overdue.

I should probably first address the fact that neither Katja nor I have updated the blog.  I hesitate to speak for Katja, but I think that she finds it difficult to blog.  English isn't her native language and emotionally she battles a more difficult foe than I do.  Reliving the experiences that she manages during he day by wrestling her fears and anxieties is an invitation to give those needy companions the upper hand in her fight to stay present and proactive for Tobias.  She is keeping a journal of much of what happens, but getting it into the blog has been a struggle.  Since Tobias came to Germany, I have switched from being with him every day to only visiting on the weekend and the rehab facility has been unhelpful by refusing to recognize me as Tobias' caregiver when Katja is away.  Without caregiver status, I'm just a normal visitor and limited to a two hour stay, which, for some reason, a few nurses feel an incredible duty to enforce.  Some weekends I've been able to stay out of sight and out of mind and was able to stay six to eight hours.  Other weekends, however,  a nurse was assigned to us who went to great lengths to ensure that I left when the two hour window expired.  This means that I haven't had a lot of time to spend with Tobias and I didn't spend any of it on the computer.  I also welcomed the break from blogging everyday.  Documenting the events for Tobias was a cathartic act and helped me to organize my understanding and locate myself on the map of frequently chaning emotions, but I was glad of a "blog vacation" and granted myself the right to finish projects around the house and pursue some selfish diversions.  I neglected several friends who emailed or messaged asking about our status.  I'm sorry about leaving the blog for so long and I'm sorry for not answering the friendly contacts.  I didn't feel prepared to engage.  I've never felt completely overwhelmed, but I needed a rest and benefited from a temporary absence of the reminders of the emotional confrontation associated with Tobias' condition.

 Tobias has been in the rehab hospital since mid-December.  Tobias usually has several therapy sessions a day, but the therapies are only 20 minutes long so the end result is that he isn't getting as much therapy as he received in the US.  We are still unsure what the best course for Tobias' recovery is.  It's hard to know if he just needs rest to complete a passive recovery so that, at a later time, his brain and body are able to participate more convincingly in his therapies or whether the activation of body and mind are the keys for his recovery.  This has been a recurring question since he was first admitted to the rehab hospital in Utah.  We have also taken the side of the argument that more activity won't harm Tobais, so we have supported more than less therapy at every step.  Tobias is still too weak to fully participate in therapies.  His recovery is limited to an ability to raise his right arm toward his chin, but not getting closer than a few inches away.  There have been a handful (I can't only think of two.) of time where Tobias touched his face by himself, but as the old saying goes "one swallow doesn't make a summer".   His arm movement has been the most visible evidence of his recovery.  He can lift his arm reliably and he has a thumbs up and a thumbs down position to answer simple questions.  When all else fails, we can communicate through his arm movements.  Cognitively Tobias seems to be fit.  He forgets some short term items, but remembers things after a few reminders.  For example, I recently purchased a 3D printer and my first test print was a tree frog for Tobias.  Katja gave him the frog and explained that I printed it for me, but the next day he didn't remember where the frog came from.  Katja has used the frog as a  daily exercise and explained multiple times to Tobias its origin story.  I asked Tobias about the frog again today and he know where it came from.  Tobias has shown no loss of his memories before the injury.  He recognizes everyone by name and remembers the day of the injury when we visited the Golden Spike Memorial with my mother.  He has also shown happiness when connecting with family and friends.  His face is still more paralyzed than not, but he has attempted several smiles that proves he can still feel joy.

Tobias is also able to move his right leg and we have been working with him to engage his core muscles by standing.  When we transfer him from the bed to the wheel chair, we start by moving the wheel chair immediately next to the bed. We sit Tobias up on the edge of the bed so that his feet are just touching the floor.  He has a serious case of "Spitzfuss", which is a condition where his feet point like a ballerina's due to the stiffening of the muscles.  He can't bend his ankles anymore so that his feet are at a 90 degree angle from his legs.  Standing him up straight on his feet would be very painful and would like pull muscles.  The doctors have given Tobias some lower leg splints that support his feet in the "just barely comfortable" position where his feet will be slowly bent closer and closer to the 90% "normal" standing position.  The splints/braces allow Tobias to stand up and support the weight of his body over his legs and torso while the feet are not yet at a 90 degree angle.  With the braces on, Tobias puts his right hand on my shoulder and when I was helping him transfer from the wheelchair to the bed, I noticed that we was rigid while standing up.  He isn't rigid, obviously when sitting in the wheel chair, so I believe this indicates that he is getting his core engaged and is able to bear most of his weight.  I just supported him horizontally so that he didn't fall sideways, but he was supporting his own weight vertically.  The rehab facility has also loaned us a standing frame where he can be supported horizontally and vertically.  It enables him to stand for longer periods of time.  Tobias wasn't capable of doing this a few weeks ago.

His left side will have the most deficiency, but we have been working with his left arm to help his brain make the proper connections.  Tobias was able to move the left arm involuntarily so we started moving it for him and encouraging him to help us.  He only has therapies during the week when I'm not around so I don't know what they work on with him.  Last week Tobias was able to move his left arm on command.  This week he is still able to move it.  The movement is not controlled well and he can only push the arm across his body toward his right side a few inches.  He doesn't seem able to pull it back toward the left yet, but this is a positive sign since he was unable to move it at will at all up to this point.  I have no idea if this new development is due to the therapies or the parental engagement or the passage of time, but it is a harbinger of hope to us.  There is still no movement in his left leg, but we haven't invested much in it yet either.

Tobias is doing a better job eating, although his progress his has been especially slow.  He struggles to swallow and requires a manually cleaning of his mouth after every meal.  We are hoping that he'll make enough progress with eating that the feeding tube in his abdomen can be removed, but this doesn't look likely in the foreseeable future.

One very happy development is his ability to speak.  We used to get a few words out of him on a good day and these were limited to yes and no mainly.  In the past two weeks Tobias has been able to speak more and has even volunteered some communication on his own as opposed to only responding to queries.  His frontal lobe experience significant damage and that has affected his motivation and short term memories.  The motivation impact is unusual because he isn't lazy or beligerent, it's more like he forgets that he can do something and he just switches off.  Katja figured out that when she reminds him that he can speak, he is much more likely to speak.  Much of the time he is still staring off into space and not able to communicate, but more frequently now he responds verbally when asked a question.  It does appear tiring for him so we'll get a few minutes of interaction before the light switches off and he drifts away.  Katja has been doing a lot of cognitive drilling with him.  She has a set of 26 pictures and Tobias correctly identified 25 of them.

As you can see, there are several reasons for hope and optimism.  Tobias is making progress.  The progress is glacial, unfortunately.  The doctors predicted that Tobias will not be making more progress in their facility in the June - July time frame and we need to begin preparations for bringing him home.  I don't know what that means exactly.  I get to see Tobias in weekly intervals and I can see clear progress from week to week so I don't know if the doctor's comments are based in an over-generalizing on when patients like Tobias tend to plateau or whether the doctor can reliably predict the trajectory of Tobias' recovery.  Coming home to us would mean that we would continue with outpatient therapies, but we would be responsible for his daily care.  If he continued to recover and emerged to the point where the doctors classify him into the next higher level of recovery, he could return to a rehab hospital for more treatment.  He is still unable to engage fully in his therapies, but from our perspective, he is engaging better week-to-week.

If his course runs back into our home and then out again to a rehab facility, we are likely to choose a different location.  There have been too many times where this facility disappointed us with their handling of our situation.  The nurses and the aides have been good and some of them have been great, but we have to fight too much to get Tobias the benefits that he should be afforded.  Last week I got into a kerfuffle with the head nurse and shift doctor over whether I should be allowed to stay with Tobias.  They were telling me that I had to follow the Germany-wide rule of two hours per hospital visit.  They were deaf to my arguments about how Tobias isn't a typical patient and how I'm staying in his room with him so I'm not a Covid risk.  Katja and I both perform many of the therapist and caretaking roles so that the nurses and aides have less work with Tobias.  This is relevant and important because of the staffing issues this facility is having at the moment.  They should have been happy to have either Katja or me here.  My other argument was that I should be giving caretaker status when Katja isn't here since Tobias requires full-time care.  The facility has accommodated other parents, but they have refused to break from their practice of a minimum of two week shifts for each change in care taker in our case.  Other than a little civil disobedience where I stayed longer in Tobias' room than officially allowed, we have been compliant and yielding.  Last week, however, I refused to leave and put up a fight.  I eventually left after we reached a compromise for the day, but I was clear and pointed in my opinion of their patient and family care attitudes.  Luckily the policies toward Covid restrictions in Germany has been relaxing as the critical care cases have declined.  Katja was told this week that I'm able to act as Tobias' caregiver on the weekends with no visitation time limits.  I'm here now enjoying those duties and benefits.

I want to close with a clear recognition and appreciation for Katja's efforts to help Tobias.  Her road has not been easy and it is a great sacrifice to put one's life on hold to become a full-time caregiver, even when one is the parent of the patient.  She has always been a tireless worker and charges headfirst into trying whatever she thinks could be beneficial.  I sit and ponder and think and consider, and Katja does.  She is an example to me in how to express love through action and many times she has found something to which Tobias has responded favorably.  Her duties here are long, strenuous and emotionally draining, but she finds a way to continue.