Update from Tyler - May 8th 2022

 It's the weekend again so I'm here with Tobias at the rehab facility.  I've come every weekend and Katja stays with Tobias from Sunday through Friday.  Our daughter Emily visits Tobias on Friday.  I haven't missed a weekend of visiting, but I haven't written many blog posts.  Part of the issue is time.  I've continued to work full time and the house projects keep me very busy.  On the weekend when I'm not at Tobias' side, I've opted to relax or tackle another house project rather than write a report of the weekend.  There are lots of house projects and it has been impossible to get to them when I'm spending the weekend at the rehab facility.  I would like to put the house in order and work through the project list, but one of the clear benefits of Tobias' situation is the ease of setting priorities when it comes to him and pretty much the rest of life, with the exception of Katja and our other kids.  One side of the scale is truly meaningful and fulfilling and the other side is installing a micro-drip system for watering the garden flowers and vegetables.  Having an automated process to water our garden would make our lives better, but spending time and supporting Tobias is the actual life that we are trying to make better.

Occasionally I think back about the scary and forboding days in Salt Lake City when we didn't know if he would live or die, or whether he would be able to communicate with us again.  It seems like a different lifetime.  Slowly he has found his way closer back to us.  Much hasn't changed, though.  The doctors continue to search for a better combination of medications to keep Tobias' brain from locking down his limbs with errant signals.  At this point, it is only his left side that still seems susceptible to involuntary and debilitating muscle stiffening.  We are grateful that he hasn't had to enduring storming since we've been in Germany, but his left side, and especially his left arm is still prone to excessive tone (tightened muscles) and involuntary spasms.  The spasms are slow, uncontrollable motions where his hand turns inward into a claw and his elbow bends his arm into a chicken wing that lifts upward until his shoulder can lift no more.  Then the arm reverses course and travels downward in reverse order.  This process can be repeated once or many times.  Luckily this is a rare occurrence, but as the medicines are swapped in and out, the spastic movement comes and goes, often without a clear direct correlation with the medication.  Sometimes Tobias reports that his arm is in pain and sometimes he claims that he is fine "of course."

One of the medications to combat the tone is called Baclofen.  Baclofen is prescribed in pill form that is subsequently crushed with mortar and pestle and is mixed with water and fed into Tobias' peg (feeding tube).  This has a few disadvantages apparently.  The drug needs to make it into the brain to be effective and going through the normal digestive system reduces the potency and can have unwanted side effects as the dosage increases in order to have the desired effect on the body.  Baclofen calms the muscles and one patient stopped breathing because the baclofen dosage in pill form had to be so high that her lungs were inadvertently impacted.  The better delivery system is to shoot the medicine directly into the spinal cord so that it travels directly to the brain where it is needed.  Tobias had such a procedure performed once in each of the last two weeks in order to see whether Baclofen and specifically Baclofen delivered directly into the spinal cord, would give Tobias a better result.  Both times the procedure was performed during the week so I wasn't present, but Katja reported that the first attempt didn't seem to benefit Tobias, but the second administration had a clear impact.  Tobias was much livelier with his right side and the doctors were very excited.  The reason for the spinal tests was to determine whether Tobias would be a good candidate for a baclofen pump.    Baclofen pumps are cell phone sized devices that are surgically inserted into the abdominal cavity and release a dose of baclofen via a tube leading from the front of the stomach directly to the spinal chord around the back.  The pump resides under the skin and the dosage can be adjusted from the outside.  The container holding the medicine is refilled by the doctor injecting a needle through the skin into the pump.  Pretty amazing.  I didn't ask how long the battery lasts.  Baclofen pumps are used for patients who don't react enough to the pill-form baclofen or who experience unwanted side-effects.  The doctors think that Tobias will benefit from the pump and, although we don't like the idea of putting such a large device next to his stomach, we'll follow the recommendations of the doctors.  We've researched what we can and it seems to make sense.

I had some high drama during my last visit to Tobias.  He still uses the feeding tube from the US.  The tube is the same size of rubbery surgical hose that we used as kids to make water squirters and slingshots.  The Germans use a flexible plastic tube that is much smaller, about the diameter of a drinking straw.  The Germans prefer a smaller length tube that extends six inches from the ingress point on the tummy and is fitted with a threaded cap that allows one to directly screw the syringes onto the peg to administer food and medicine.  The US hose was a good two feet long and only had a cap at the end of the tube.  Syringes needed to have an adapter screwed on the end and were pressure fitted to administer anything through the tube.  The Germans were full of comments regarding the benefits of their system, but no one really understood how the US peg was held into place in Tobias' abdomen, so it was never changed out for the perceived superior German peg.  The doctors even performed an ultrasound to see what how the US peg was secured inside Tobias, but the investigation was inconclusive so no action was taken.  They all wanted to swap it out, but no one dared to pull it out.  

Enter Tobias' dad (me).

I was helping Tobias to stand up from his wheelchair so that we could walk to the bed.  I have Tobias hold my left shoulder with his right hand and then we stand up together from the wheelchair.  I didn't notice that the long end of the feeding tube had wrapped around the wheel chair, so when I stood up with Tobias, the end of the tube stayed attached to the chair and the other end of the peg that goes into his stomach just pulled right out of his body.  I didn't notice anything until I saw that his t-shirt had a wet spot from the inside.  I pulled his shirt up and saw that the tube had been pulled out and he only had a hole at the top of this stomach where liquid was now coming out.  It wasn't gross or violent-looking, but I knew I needed to react.  Luckily the nurse who was helping me at the time reacted calmly and with authority.  He had me carry Tobias quickly to his bed and lay him on his back.  He grabbed a sterile tube that is used to suction out Tobias' month and inserted one end into the open hole and the other end  into a bedpan-like container next to Tobias on the bed.  A small amount of half-digested liquid leaked out of Tobias while a doctor was called who quickly put in the German style peg.  I was concerned that I'd done something dangerous to Tobias, but the doctor and nurse were unconcerned.  It apparently happens "all the time".  I'm still unsure of how the feeding tube works because the doctor literally pushed the new tube about two inches into Tobias' abdomen and then inflated a bulb at the "inside" end with some sterile water to keep it from pulling out.  I expected that Tobias would need a visit to the hospital and an operation to reattach the feeding tube only to find out that he could have it taken care of in the drive-through of a McDonalds as long as the person had a sterile tube and knew how to inflate the inside bulb.  I felt great relief when it was all done and Tobias was okay again.  I was concerned that my inattentiveness had harmed Tobias, but I got off lucky and learned an important lesson about thinking carefully though each process of working with Tobias without having to pay a high cost for my mistake.  The only critical part, apparently, is that something needs to be inserted in the hole quickly because it can close us with great rapidity.

Tobias continues to make progress in small steps.  He isn't moving ahead in leaps and bounds like he did in March, but every week he is slightly better at some things.  There are things that he regresses in as well, but overall he is marching forward.  He surprises me sometimes with how quickly he can move his right arm and leg.  I think that he is able to move on his left side a little better than last week, but it is hard to tell.  Sometimes I can't decide if he is moving his left leg or if he is just shifting his right leg and body and the left leg is moving indirectly.  His left arm continues to be largely inert, but sometimes he can move it upwards toward his chin.  Tobias continues to speak frequently, but he can't move his cheeks or tongue well so we can't understand most of what he is trying to say.  I've taken to keeping a pad of paper and felt-tip pen close at hand, because he is able to write well.  I think he is making memory progress, but I don't have a good way to measure this objectively.  A few weeks ago I asked him to write down what I was having trouble understanding.  I asked him to "write down your message" and he wrote the word "hello".  By the time I had picked up the paper and pen he had forgotten what he wanted to say and "hello" was his go-to message at the time.  Now, however, he can retain his thought process for several minutes usually.  After ten minutes, however, he'll still have forgotten that I came to visit or what had happened, but he is making slow progress.  I usually ask him where he is and why he is here.  He knows that he is in the hospital, but he sometimes forgets why and he has never remembered the name of the city.  Katja told me the other day, however, that Tobias remembered the name of one of his therapists, which is a positive sign.

Tobias has difficulty speaking because he can't move his cheeks or his tongue well.  I've started challenging him to speak slowly and clearly and for some reason he finds it extremely funny when I exaggerate my pronunciation.  He has also shown that he can speak much clearer than he normally does when he mimics my exaggerated speech.  I take this to mean that he can improve his speaking with practice and concentration.  The unfortunate part is that he doesn't remember things after a few minutes so he doesn't remember to speak slowly in order to give his mouth a better chance at pronouncing things clearly.  He seems to also have a hard time in speaking slowly.  I have to break his speech down to a word at a time in order to get him to focus on proper enunciation.  As soon as he puts two or more words together, they all slip out in a bunch like he doesn't have the ability to break a sentence into single words.

Tobias has been in the rehab facility longer than most of the patients.  A few patients have seniority over Tobias, but most of them come and go in a few week intervals.  Most of the patients are in better shape than Tobias, but some are worse off and they are all sad.  Yesterday I noticed a new little girl, about eight years old, sitting at supper with her mother and younger sibling.  I've never seen her before, but I was struck by the Frankenstein-like scar across the top of her forehead.  Like Tobias, her cranium had been removed and was just recently replaced with the sutures still showing visibly.  She isn't alone here.  There are many vulnerable-looking little children who all have unfortunate, unfair and sad stories to tell.  Many of them are here for ailments that the doctors are unable to explain.  I spoke with a father and daughter at supper yesterday where the daughter's condition has remained undiagnosed since she was three years old.  She'll be sixteen in July.  She learned to walk late and then her condition grew progressively worse until she couldn't walk, move her arms and eventually not even speak.  A few months ago she was basically in a vegetative state, unable to move, but cognitively she was still active.  I think she wasn't able to chew or swallow in the end.  Then she got corona and was in intensive care for three weeks.  When she emerged from the ICU, she could talk and feed herself again.  The dad is terrified that she may regress back to where she was and frustrated that no one can explain why she was unresponsive and then responsive again.  He is grateful to have this time to interact with his daughter.  There is another young lady here with an undiagnosed illness.  When I first met her she hung sideways in her wheelchair unable to lift her head or contain the saliva inside her mouth.  Her mother told me that she had never been able to walk and that the doctors can't explain why or give any kind of prognosis.  I noticed yesterday that she is holding her head up and communicating better than before.  She was always able to smile, frown and express emotion, but yesterday I was able to discern some words that she used to answer simple questions.  There are plenty of reasons to be sad and depressed when looking at the kids in this facility, but each of the examples I listed above are cases where the patient is pervasively happy.  They don't know any different and they are happy with what they have.

Today was a good day for Tobias.  We've been building his endurance in the travel wheel chair so that we can take him on a short field trip and get him away from the hospital for a few hours.  Today was the first day since last August that we escaped the hospital environs with Tobias.  We drove 15 minutes to the center of the small town and walked around the best that we could.  Old towns like Brandenburg are full of cobblestones and not particularly wheelchair-friendly.  We did find a smooth path that led into a garden area and we ended up at a restaurant to get Tobias some ice cream and some cake for mom and dad.  Tobias has been having trouble eating at meal times but he went through his ice cream with no problem.  It's making me think that his inability to swallow may be an active critique on the quality of the hospital kitchen rather than a neurological deficiency.  Tobias also cracked up a lot during our break.  He's laughed a few times, but never as much as today.  Earlier in the day I asked Tobias what was the purpose of life.  This was to test if he remembered his answer a few weeks ago when his sister asked him the same question as a joke and he responded with the peace sign and said "Peace!".  He thought it was funny and I thought it may have been funny enough to leave a memory.  At my question today he said something starting with a "p", but it wasn't peace.  I had him repeat himself several times, but I couldn't decipher his message.  I grabbed a pen and paper and had him write it out, but this didn't work either.  It has been a fail-proof method to make sense of Tobias' incoherency, but it didn't hit the mark today.  He wrote his answer three times, but I couldn't make sense of it.  One of the words looked a lot like "potato", so I asked Tobias if he thought the purpose of life was a potato.  He understood that I was making a joke and he thought it was funny.  We kept the joke alive all day and made several references to it during our ice cream and cake.  Tobias seemed to lose control as the joke got the best of him and he couldn't talk because he was laughing so hard.  It helped that we facetimed Emily and she only has to look at Tobias to get a laugh out of him.  Katja and I haven't seen Tobias so happy since before his injury.  It felt like I was taking a shower and the fear and concern that Tobias may not be able to experience joy or normal happiness again washed off me like sweat and dirt after an interminably hot day of difficult and exhausting labor.  Sometimes it takes an experience like this for me to bring the deep and hidden emotions to light.  They are always there and having an effect on you, but they can lurk behind a curtain and you don't recognize them until an experience pulls back the curtain and you see them for the first time.  The experience wasn't particularly cathartic, but it was a relief to see our boy overcome with joyous laughter.

Tobias has shown surprising improvements that give us great hope.  It's dangerous, however, to draw a straight line from these improvements to the full recovery that we are hoping for.  There are setbacks and not everything that I interpret as "recovered" is really recovered.  Tobias still forgets pretty much everything after 15 minutes and he struggles to stay present for long periods of time.  The more he is able to communicate, the more we see that he has cognitive deficiencies that still need to heal or be worked around.  This is the difficult path that he and we are on together.  There is no promise of recovery.  Small improvements are celebrated and recognition of newly discovered deficiencies are accepted with resolve.  I remember thinking that all the pomp and circumstance surrounding my high school graduation was overblown. It seemed inappropriately grand for something that in actuality wasn't that hard.  I had a similar feeling after my marriage ceremony.  We said "I do" and then we were married.  It felt too easy and I thought it would have made more sense to endure some real struggle before having such big celebrations.  Tobias' recovery experience is the struggle that I guess I was looking for.  It takes focus and strength, physically, cerebrally and emotionally.  It keeps going and you need to keep going with it to stay on top of your emotions and your son's recovery.  It isn't easy and it is requiring more resolve than I've ever needed before.  Difficulties can push us down, but I think they usually build us up by inducing us to rise to the occasion and overcome them.  I don't think that this experience with Tobias has made me a better, stronger person and I would wish his situation away if I could, but I know that we will make it through this struggle and we will do our best to help our son return to his normal life.

Hope over fear.