Tobias' Recovery

Back to waning today, or at least not waxing.  Tobias was unresponsive for most of the day, but he did have his eyes open often.  His eyes are closed for the most part, but every so often he will open them an look around.  Often he stares off in the distance, but sometimes we can get him to focus.  It helps if there is something to keep his attention.  Today during one of his wakeful moments, I played back the videos that friends have sent us about their memories with Tobias and he kept his eyes open and watching the videos for the most part.  His face shows no sign of emotion unfortunately, so it's hard to know how much of the video he is processing.  All my efforts to extract any communication from him were ineffective, except, of course, the amazing spa inquisition.  The hot washcloth technique put him in a relaxed enough and alert enough position that he was able to answer some simple questions before the spa joy disappeared like water into sa...

The red on his lips is from flavored ice Tobias bounced back from his extended sleep yesterday.  In the morning, during his therapies, he was still in power conservation mode, but as soon as the Saturday abbreviated therapy sessions were completed, Tobias opened his eyes and started to talk to us more.  I've developed a secret interrogation technique to get Tobias talking easier and it worked well today.  I noticed that washing Tobias' face with a hot, wet washcloth, similar to the hot cloth one receives at the end of a long commercial airline flight, seemed to relax him and wake him up at the same time.  A quick face wash with the hot cloth usually elicits a contented, verbal sigh from Tobias and for 30 seconds or so he is more capable of connecting whatever wires are necessary in his brain to answer questions.  I've employed the spa inquisition technique to get multiple answers from him several times now.  He has surprised us with what he has been able to...

One of the brain injury maxims that we hear over and over is that a brain injury patient will wax and wane on their recovery journey.  Yesterday was a wax, today was a wane.  Tobias seems to have slept through the entire day and his head is tilting hard to the left still.  His heart rate has been over 100 for much of the day and is now between 110 and 120.  There was a period of about an hour where his was relaxed and his heart rate stayed in the 70s and even dropped into the 60s.  He isn't sweating or posturing, but his heart rate is higher than where it had been trending. The speech therapist met with Tobias before we were in the hospital and she reporting that he was difficult to keep awake.  He was only alert for 10 minutes of the 45 minutes session, but he did vocalize a loud shout at one point.  She isn't sure why he did this and we haven't heard of it happening before.  It was probably a reaction to a pain stimulus, she thinks, but she coul...

Tobias had higher storming symptoms today.  As usual, we aren't sure what the root cause for the symptoms are.  Tobias' heart rate was over 100 most of the day, but stayed below 110 for the most part.  We saw a spike to 120 and the aide recorded a heart rate of 150 at 7am before we arrived.  His muscles were more rigid and his fever ran slightly high.  He didn't sweat much though and I don't remember the last time he had the shakes due to storming.  His eyes were frequently open and his demeanor didn't indicate that he was uncomfortable or in pain.  The reason for his storming may be the increase of the brain stimulant.  Since yesterday the dosage has been doubled to 200 mg.  We spoke with the resident doctor in the afternoon and he suggested that there may be some underlying pain caused by the cast on Tobias' leg that resulted in the storm-like reactions.  Once the nurse administered a Tylenol dose, Tobias' heart rate settled down....

There isn't much news to report today.  Tobias had a calm day and it was similar to yesterday.  He is speaking occasionally, but for the most part he has been exhausted and sleeps through the day.  His heart rate was in the 70s for much of the day, but it has spiked to 110 this evening, which is when he normally starts to storm, if he storms at all.  He seems more rigid in tonight's storming episode, but it isn't dramatically different than yesterday.  It's mild enough that he is sleeping through it so we grant him his peace and don't wake him up by trying to make him more comfortable in our efforts to lower his heart rate.  He was doing so well in the late afternoon that the nurse suggested that we skip his Tylenol dose and we agreed.  Perhaps this is why his storming tonight seems more severe.  One medically interesting thing did happen today, however.  When Tobias' trache bandage was changed out, we got to see his stoma.  It looks lik...

It was a big day for Tobias.  He held his head up better than he has ever done since the injury.  He mouthed "mom" for the first time, and not once, but twice.  The medical team removed his trache and left him with a big hole in his neck that will apparently heal over in two days. And he got a new cast on his left foot to protect him from getting a contracture, where the muscle and bone bond, locking the foot in a permanent disfigured state.  Breaking news: Tobias just nodded his head (very slightly, but distinctly) to say yes to a question from Katja.  Another first! Either the medications are dialed in right or Tobias' brain has recovered enough that it has passed the storming threat because Tobias has had many calm days in a row.  He has slight storming symptoms on infrequent occasions, but it feels like we have left the storming behind us.  I went with Tobias to his morning OT/PT session and he was sat on the end of the padded table again with his ...

Tobias' swelling has gone down in his right eye and he was able to open it slightly, which is good because he was "assessed" by the three therapy disciplines today.  Normally Tobias has had two joint therapy sessions a day with physical therapy and occupational therapy and one session a day with speech therapy.  Today the scheduler, for whatever reason, booked five 45 minute sessions with Tobias.  Instead of two joint sessions with PT and OT, Tobias had two individual sessions with each therapist plus one therapy with speech.  It was a lot for Tobias and he was already exhausted from the surgery.  In the end the PT and OT decided to override the schedule and they combined the two therapies in the afternoon into one so that Tobias had a free 45 minute session to rest.  Tobias' responsiveness is on par with from before the cranioplasty.  He still isn't able to respond very often, but he seems to have avoided the three- to four-day trough that many patien...

The post-surgery face arrived one day late for Tobias.  I remarked yesterday how surprised I was that Tobias looked so good after his cranioplasty, but it only took a day for the swelling to find the right side of his face.  His right eye is swollen shut and looks like he got into a scuffle with whoever fought Rocky Balboa in pretty much any of the Rocky franchise movies.  It isn't as puffy as the first round of procedures, but it will take some time to deflate.  His forehead and top-right side of his face is a bruised reddish color the shape of a boxing glove punch to the side of his face.  The white bandage has been removed as well, revealing a row of tightly spaced staples along the entire incision that starts at the top right center of his head near his hairline and continues down the center line of his head offset a good inch to Tobias' right side.  The incision continues to the back of his head to just above ear level before turning back in a smooth a...

Tobias spent a restful night in the neuro acute care unit (NAC).  He was given the first dose of oxycodone at 9:45 and another 10 mg six hours later.  When I arrived in the morning he was sleeping comfortable with no signs of stress or storming.  One of the nurse at the station where I need to sign in and pick up a daily name tag was the same nurse who received Tobias into his room last night.  She only spent an hour with Tobias since it was so close to shift change, but she remembered my name and volunteered that she had heard from the rehab hospital that they were looking to transfer him back to their care tomorrow.  I've learned to take these advice with a grain of salt, since many of them get changed before they are realized.  It would be a good thing for Tobias to go back to the rehab hospital tomorrow, if only as evidence that his cranioplasty (CP) went extremely well.  All evidence points toward a successful outcome.  He doesn't appear to b...

I called the rehab hospital in the morning to learn that, as planned, Tobias had been discharged and transferred to the neurology surgical unit.  This meant that the "surg" team would perform the cranioplasty at 10 or 11 and after 2.5 - 3 hours of surgery and subsequent recovery time, we would be able to see Tobias again with his cranium intact.  I usually feel compelled to get to the hospital as close to 9am as possible to watch over Tobias and ensure that he is comfortable and ready for his therapy sessions.  The nurses and their aides do a good job of this, but it's better to have someone with Tobias full time and we have saved Tobias some precious time with the therapists by making sure that he isn't discovered to be soiled when the therapists are preparing him for the transfer to the wheelchair.  Today we didn't need to be at the hospital until noon or probably 1pm so we planned for a short hike above the hospital in the morning.  The weather has been jumpi...

Tobias bounced back from his off-day yesterday.  His white blood cell count is back to normal and the doctors think that he must have had some acid reflux back up onto his lungs which caused the slight fever, high white blood cell count and the higher heart rate.  Tobias was put on a broad range antibiotic last night when the doctors suspected an infection was the cause of his deteriorated condition.  This morning, however, when his blood results no longer hinted at an infection, the antibiotic was stopped.  Tobias' temperature was back to normal and his heart rate was below 100.  He was more responsive than yesterday, but not yet back to his renaissance form of three days ago.  He was able to move his arm to give me the world's slowest high five, however, since he was unable to unfurl his fingers, we technically performed a "flump", which, my daughter informed me, is the term used to describe when you are unclear about giving a "high five" or a "fist b...

Tobias has had several days of increasing alertness, his speaking has been getting more frequent every day and his storming has been decreasing along with a heart rate that keeps forgetting it belongs to a brain injury patient and beats normally for hours on end.  His cranioplasty is scheduled for Friday, which with some luck puts him back in the rehab hospital on Monday and kissing goodbye to his trache a few days after.  All of this points to an acceleration of his rehabilitation. Combine the above with the oft-repeated maxim that a brain on the mend waxes and wanes as well as the one about the journey to recovery is beset by many setbacks and you can do the math yourself about how Tobias' day went.  Spoiler alert: It went poorly. We were suspicious yesterday when he seemed less alert and more out-of-sorts than usual.  His responsiveness was very low and he couldn't keep his eyes open despite our frequents efforts to wake him up.  His mouth and cheeks drooped ...

Tobias' progress leveled off today.  He was exhausted today and couldn't respond much during his multiple therapy sessions that we joined.  The first therapy session started before we were allowed in the hospital and may be why Tobias was so tired for the rest of the day.  He was apparently responsive at that early hour.  He scored 16 points on the Coma Recovery Scale test.  His top score to date was 13, but he was able to demonstrate all of his prior skills and added verbal responses to his list of accomplishments.  He is getting closer to being classified as conscious. We understood him a few times today.  He responded with "yes" and "good".  He even used the grammatically correct "well" when asked how he slept the night before.  The night nurse left a message that Tobias wished him "happy birthday" when Tobias found out that it was the nurse's birthday.  Tobias opened his mouth wide enough for me to get the suction wand inside and ...

Tobias is on a winning streak.  Even though he stormed more today and his heart rate reached 130 at one point, he is more alert each day and his speaking is becoming more frequent.  He speaks in a weak whisper that is often too quiet to interpret, but we can sometimes understand him based on syllable fragments and the shape of his lips.  In addition to the verbal sleuthing that we have to do, Tobias gave us a few very clear responses and once even got his vocal chords engaged.  His motion responses are more miss than hit, but he is trending in a good direction and today was successful in getting his right hand to expand and then close around my hand.  It feels great to have my son squeeze my hand intentionally. The speech therapist hadn’t heard Tobias speak yet and was excited to meet with him.  Tobias looked like he was trying to speak, but he was unable to pull it off successfully.  However, when the speech therapist was pushing Tobias to open his mo...

After yesterday's shocking verbal miracle, we didn't know what to expect today.  Tobias receives 100 mg of the brain stimulant, Modafinil, at 9am and by 11am yesterday he was storming.  Today, however, he didn't storm at all in the morning.  He received the normal medications, but when we arrived the nurse and his aide told us that Tobias had a very calm night and they believed that Tobias was especially sensitive to noise and activity.  They kept the door shut and minimized all stimulus and Tobias was as calm as a sleeping puppy with a heart rate in the low 80's.  We didn't want to rock the boat and remained quieter than flies on the wall.  There is no therapy on Sunday and so we just let Tobias sleep.  After an hour he woke up, but still had his HR in the 80s so we decided to take advantage of the continued autumn brilliance and take Tobias for a push outside in his wheelchair.  The next few days are predicted to be cold and wet and we wanted to...