Tobias' Recovery

I stayed home at my sister's house today, self-isolating in the bedroom and only going out for lunch and bathroom breaks.  I have no Covid symptoms and tested negative yesterday, but I'm playing it safe.   Tobias had a special day today.  He gets tired of the monotony in the hospital and wants to stay outside as long as possible when I take him for walks, even if it is just to pace back and forth on the same 50 yards of sidewalk concrete.  Today he was in for a treat.  The physical therapist and the occupational therapist arranged for a van to bring all of them to a local aviary and botanical garden.  This was a welcome change of pace and provided a surge of new sensory stimuli for Tobias.  As a little boy, he was fascinated with birds and we couldn't go for a walk without his pockets getting stuffed with any feathers he found on the way.  He is intrigued by biology in general and enjoyed seeing different plants and fauna.  His eyes were...

Today was hands-down the best day for me since Tobias' injury with one large caveat.  Let me address the caveat first. At 4:30 pm today, after experiencing the best day that Tobias has had since his injury, I received a message that someone, with whom I came into contact on Saturday of last week, had just tested positive for Covid.  The person had been exposed to Covid on Thursday, so it would have been unlikely that they would have already been infectious, however, I have taken care of Tobias every day and seen several friends at the hospital, so if I am infectious, I will have exposed several people.  Tobias would be the most at risk.  I do not wear a mask when I'm alone in the room with Tobias because it is not required by the hospital.  I do wear a mask in common areas, except when eating or when I'm alone with a small group of people who are not sick or have not been exposed to Covid.  I learned online that Covid symptoms usually occur on day five or s...

I took Tobias on a long walk as soon as I could this morning.  When I arrived he was still getting breakfast from the nurse.  She had been feeding him for an hour before she reached the conclusion that he wasn't going to eat any more.  The nurse and the aide today have been extremely attentive and selfless.  They watched over Tobias carefully and they picked up the extra care that Katja and I normally provide because I wasn't able to today.   When Tobias finished breakfast, I dressed him warmly and we went out for a walk.  We had a visitor planned for noon and I was intent on getting Tobias outside.  We walked up to the hospital above us on the hill and spent almost two hours walking around the mountain-facing patio in the back.  It was so warm that we were able to sit with our faces into the sun and enjoy the bracing chill comfortably. At noon I started to feed Tobias and when our guest came we chatted for a bit before heading off to lunch i...

Tobias' heart rate has been over 100 all day and I don't understand why.  The nurses' aide told me that Tobias hit 133 this morning and I saw him spend over an hour in the 120s.  Today is Saturday and there have been no medication changes so it doesn't make sense that he would spike today unless it took a few days for the propanolol to metabolize out of his system.  He has spiked up over 100 a few times in the last couple of days since the propanolol was removed from his medications, but the spikes cycled back down after a few minutes.  Today has been an exception with his high heart rate lasting the entire duration of the day. Tobias ate well this morning, but he follows a pattern where he can open his mouth, chew and swallow for about 20 minutes before falling asleep or wandering off to where ever his mind goes when he checks out.  It's a struggle to wait for him to be present again long enough to swallow the remaining food in his mouth.  Tobias consisten...

As is par for the course in Tobias' recovery, today was a mix of successes and, well not successes.  Tobias was able to stand with less assistance than ever before.  He was still being supported at the knees, back and head, but he would have folded only a few weeks earlier in the same exercise.  We are very excited about this advance in his recovery.  The less than success is that he hardly speaks now.  He has to drink in order to speak.  Our theory is that the cold liquid passing over his vocal chords "wakes them up" and triggers his brain to remember how to activate them for speech.  It's similar with his right hand.  Sometimes he won't be able to move it, but if we touch it, he can start moving it again. I took Tobias outside for a walk today and he was awake during most of it.  Today was cold, but the sun was out and we were dressed appropriately.  Tobias could talk at all during the walk, but he was quick to respond with his hand to...

Happy Thanksgiving everyone. Tobias had a busy first half of the day and a quiet second half.  All of the therapy was scheduled end to end in the morning so that the therapists could leave at noon.  Tobias also had his grandma and his aunt and cousin visit.  I got to feed him lunch, but he was tired and he wasn't able to stay focused long enough.  He didn't talk much today, but he kept raising his hand to tell me that he wanted to eat more, but as soon as I put more food in his mouth he would close his eyes and stop chewing and swallowing.  I left at 2:30 to join my family’s Thanksgiving celebration.  I felt guilty for leaving him.  It may have been lonely spending the last half of the day on Thanksgiving by oneself.  He can't communicate so we don't know for sure.  There are going to be more uncomfortable choices, I'm sure.  I know that we can't be there for him 24x7 and there is a practical limit to what we can do for him, but I still ...

Tobias was tired today.  Each successive therapy reported that he was more and more tired.  He was still strong enough at lunch time to eat well, but he continued to tire and by dinner time he couldn't keep his eyes open.  To make eating worse, I ordered noodles in marinara sauce for Tobias' dinner and forgot to order jello or anything else that would be easy to swallow.  The noodles were difficult for Tobias to chew and swallow and it made dinner tiring and short.  Tobias fell asleep and I couldn't wake him up... until I put Psych on the TV.  Tobias miraculously opened both eyes and watched for ten minutes at a time before drifting off for short naps.  I won't be ordering the noodles again. The doctor and the case manager both spoke with contacts in Germany.  The bottom line is that Tobias' target return date is December 4th.  The neurosurgeon will perform the angiogram at the beginning of next week and the air ambulance will schedule the re...

It was strange to Facetime with Katja in Germany this morning.  She arrived safely and was adored by her granddaughter who remembered her fondly.  Tobias was in therapy all morning so he was exhausted when it was my time to work with him on my own so I let him sleep.  The doctor stopped by in the early afternoon to confirm that he spoke with the air ambulance company.  He explained that Tobias would need to stay another week for the angiogram and he was referred to the medical team in Germany that the air ambulance company is consulting.  The bottom line of the exchange is that we won't be asked transfer Tobias in the next few days, but we don't have a confirmed leave date.  The best guess is that the angiogram will be conducted at the beginning of next week and then Tobias will be transferred by the end of the week.  The doctor also confirmed that he will recommend that I stay with Tobias when he speaks to the medical team. Hope over fear.

Today was a big day.  It was Tobias' sister's birthday and it was the day that his mom flew back to Germany to be there when he arrives. Katja flew at 2:45 in the afternoon, but we went to the airport first thing in the morning to drop off her luggage.  She wasn't able to check in online since her flight is international and we didn't want to get stressed in the afternoon.  She checked in and turned in her luggage.  The medical transport flight can only take a small carryon for Tobias and we still don't know if I will be allowed on his medical flight so Katja had to take three suitcases for Tobias in addition to her suitcase.  The first extra bag costs $100 and any bag thereafter costs $285.  We explained the reason for the bags and pointed out that Tobias won't be able to use his return flight.  The airline generously comped us for two of Tobias' bags so we only had to pay the $100 extra fee.  I should also mention that the line at the airport wa...

Katja and I spent a quiet day with Tobias.  It was an average day for him.  He spoke a few words, but remained mainly silent.  His range of motion wasn't as good as it has been, but he was able to move his arm.  His heart rate was surprisingly high at just under 100, but he confirmed verbally that he was comfortable so I'm not sure why his heart was beating faster than normal. Katja is flying back to Germany tomorrow and although we're certain that she doesn't need to have a negative Covid test to transit Amsterdam and fly onward to Berlin, we decided to get a test for Katja to be sure.  In Germany the rapid antigen tests are only valid for 24 hours, which means that we had to find a place to administer the test on a Sunday.  Luckily we found one and waited in a line of cars in some random parking lot for 45 minutes for our turn to come.  With the negative test in hand, Katja is more confident that she'll have no troubles on her flight home.  She ...

Saturday has fewer therapy sessions than the weekdays so we had more time with Tobias today.  He was responsive in word and deed in the morning.  He answered most of the question from the OT with one word answers, but he was quick to answer most of the time.  His range of motion was as good as it ever has been today.  He lifts his right arm by bending his elbow (flexing) and can get to within six inches of his chin.  He is good as giving "fist bumps" by pushing his hand forward by extending his elbow.  He can move his hand about six inches in five seconds, so he isn't fast, but it used to take him three times as long.  He can extend his knee and move his foot 12 inches in a kicking motion that takes him a second to execute, but for the past few days he hasn't been able to activate his leg.  We've been advised to use "tactile reinforcement" when speaking with Tobias to help him reconnect his muscles to his brain.  This means that it is helpful...

Today is a news day.  Katja and I woke up to an early call from Germany.  The air ambulance company tasked to repatriate Tobias called to confirm that his medical transport flight has been approved and that they would be flying him back to Germany in the next few days.  This caught us off-guard because we have been working towards a flight in the first or second week of December.  The German lady on the phone sounded hurried and stressed and she wasn't interested in listening to any pushback on our part.  We didn't think it would be productive to argue with her so we thanked her for the information and decided to plan our immediate future on the commute to the hospital. We think there is a good chance that we'll be able to keep Tobias in the rehab hospital more than just the next few days because the doctors want to complete another angiogram before Tobias flies to Germany.  We want some more time because we want Katja to arrive as our advance party to get ...

No news to report today.  Tobias has been exhausted and tired, but his heart rate has been low and he appears relaxed.  His responsiveness was muted today and he didn't talk much.  We didn't get a chance to feed him because of scheduling.  His lunch arrived when he was needed in therapy and his dinner arrived when he was out on a walk.  It's not a lot of fun to eat cold food. Tobias' rehab doctor got in touch with his counterpart in Germany who is signing off on the return flight.  Apparently everything is in order and now it is a matter of the insurance company arranging the details.  We've asked to learn what the flight date will be so that we can make plans.  The day is getting closer. Tobias' neurosurgeon also came by for a visit today.  He was happy with everything that he saw with Tobias and pronounced that his condition was normal for the circumstances.  He will perform another CT scan and an angiogram shortly before the flight to...

Tobias was in better form today.  He had two periods where he was mouthing words with regularity and he passed his next swallowing test.  The speaking periods only lasted for a few minutes and he fell back into a staring stupor, but today was a better day than yesterday. Tobias had most of his therapy sessions in the morning and so the afternoon was free.  The therapies exhaust for him so I let him sleep for an hour when he returned.  He didn't eat much for breakfast or for lunch.  I wasn't around to see why he didn't eat breakfast, but I think he was too tired to eat much at lunch. Two speech therapists participated in Tobias' therapy today.  They administered the swallowing test where they drop a camera down his nose to watch his ability to swallow as they feed him foods with different textures and consistencies.  They were visibly surprised at how well Tobias swallowed.  The lady running the camera kept calling me over to point out how nothing ...

Tobias' activity has been slowing down over the last two days and today he was quiet.  He spoke to a few people, but not much and he didn't seem close to speaking with me.  He seemed far away and/or exhausted today.  His heart rate was up and down from a low of 68 to a high of 95, but he mainly hung out in the safe 80s.  Katja wanted to give him a rest day so we didn't pester him with questions or spa treatments to wake him up.  I massaged his neck, arms and feet.  The feet are especially important because they appear to be severely affected by the storming and the lack of motion.  We are worried that he will lose mobility in them and it will only grow harder to restore his flexibility. Tobias was active for the speech therapist, but was sleepy for the other sessions and he could eat much today.  The speech therapist has been trying to build his swallowing strength.  He attaches two electrodes to the underside of Tobias' jaw on some "anti-swa...

On the way to the hospital today, the car radio played "Have You Ever Seen The Rain" by Credence Clearwater Revival.  This is one of the songs that Tobias liked to listen to as part of his eclectic musical taste.  The chorus lyrics are "I wanna know, have you ever seen the rain?  Comin' down on a sunny day".  This made me sad for a moment to think about Tobias' situation and how close one of his favorite song lyrics could be applied to his current situation.  Tobias' future was very definitely a sunny day and this turn of events is rain. Tobias' eating stamina has dropped off slightly.  He didn't finish as much food in any of his meals, but he is still getting a lot of good practice.  He spoke several times today, but also gave me the "what language are you speaking" stare for most of my questions.  The botox in his left arm has made it easier to bend his arm and wrist, but he still pulls the arm up onto his chest, which appears to be d...

On Sundays there are rarely therapy sessions and today was no exception.  This means that I had lots of time to work with Tobias.  When I arrived this morning his breakfast had been delivered, but the nurse's aide wasn't able to get Tobias to eat much.  Tobias can't yet open his mouth so it takes a lot of coaxing and a little help to get him to start eating.  If you don't know the tricks to get him to open his mouth it's a hard sell.  I tried to get him to eat more of the breakfast and he did fairly well, but after 30 minutes he had only eaten a few spoonfuls of scrambled eggs and breakfast burrito (all pureed, of course).  He drank the container of orange juice and had lots of practice with small swallows.  I stopped partially because he was slowing down and having more difficulty swallowing, but also because his heart rate was over 110 and I wanted to reposition him. I tried to reposition Tobias, but his heart rate didn't drop.  I ended up worki...

On November 8 Tobias finished a container of cranberry juice for the first time since his injury and I declared "Cranberry Juice Day" a new Dunn family day of remembrance.  Judging by those same standards makes today "Peach Cobbler Day".  Tobias has been steadily improving his ability to ingest spoon-fed food, but he has only managed to eat about 25% of the portions that the hospital delivers.  Today he received a Goldilocks meal of pureed turkey (too dry), pureed green beans (too bland) and pureed peach cobbler (just right!).  Like the responsible father that I am, I tasted each option to make sure that the food wasn't too hot and to see if the hospital food was any good.  I fed him the green beans and turkey first, but he was having trouble staying awake and I was worried that dinner wouldn't provide much swallowing practice.  I learned that he responds better to juice and especially well when the juice is served on the rocks.  The cold seems to wake...

Tobias slept poorly last night and maintained a heart rate over 100 for much of the time.  It is surprising then that he did very well this morning.  I arrived at 9am and he was already in his speech therapy that started before visitors are allowed.  The first OT session followed directly after the ST and the lady who is filling in for the normal OT wanted to have Tobias practice eating.  Tobias is getting "regular" hospital food now with the only point worth noting is that the food is pureed so that Tobias doesn't need to chew it.  She wasn't familiar with Tobias' eating habits so I showed her how I have been getting Tobias to drink and eat.  He ended up eating five to ten spoonfuls of the scrambled eggs and peaches in addition to finishing off a container of orange juice.  The session ended when the PT team showed up to take Tobias down to the gym for a joint PT/OT session.  The two PTs helped the OT to sit Tobias at the side of one of the low, ...

Tobias found his words again this afternoon.  He is speaking again as well or better than a few days ago.  He was able to answer a series of questions for me.  "Do you want to eat, drink or watch TV?"  (TV)  "Do you want to watch a movie or a documentary?" (Documentary)  He provided us with some hard evidence that his personality hasn't changed when his mother hugged him.  (He never liked being hugged since he was a teenager).  He made some funny expression and so Katja asked "Do you want to be hugged?" (No).  "Hey, did you just say that you don't want your own mother to hug you?" (Yes)  I think it would have been diplomatically smarter to perhaps not answer so truthfully in this circumstance, but at least we know we're dealing with the same Tobias.  Tobias was visited by his aunt, two cousins and friends of mine so it was a busy day for him.  He correctly named both cousins and spoke longer .  His voice wasn't present, bu...

Tobias' days are starting to trend toward the average of the last weeks.  His vital signs are all in safe regions, he spends a couple of hours a day with his eyes open, but his speaking is getting rarer.  His swallowing has continued to improve and the speech therapist approved him to move from thick liquids to puréed foods.  Otherwise there were few changes in his behavior. On the medicine front, we don't see a dramatic change from the increased brain stimulant, Modafinil.  It's possible that his eyes are open more often, but not enough to be immediately noticeable and his responses haven't improved measurably.  The doctor is reducing the amount of gabapentin, which is a drug used to make patients less anxious and, in Tobias' case, is helpful to reduce the effects of storming.  Once Tobias has gone off of the gabapentin, the doctor wants to add Ritalin to help calm the errant brain signaling and give Tobias a better chance to voluntarily control his body....

Today was spa day for Tobias, or at least as close as the therapist could make it into a spa day.  Tobias' rehab doctor pointed out that it wouldn't be a good idea to submerge the entry point of the feeding peg in Tobias' torso to whatever may be floating around in the water so Tobias' immersive bath ending up being a sitting bath that reached just over his legs.  It still did the trick, however, and Tobias was super relaxed after the bath treatment.  The area of his brain responsible for controlling his left arm sustained the most damage for motor skills.  Tobias has frequently pulled his left arm up to his chest with his hand distorted downward.  It looks like a painful t-rex limb and it is usually full of tight, stressed muscles.  The brain just can't tell it to relax.  Occasionally Tobias will be relaxed everywhere, but if any part of him begins to show tone, it's his left arm.  After his spa treatment, Tobias left arm was loose and flexible....