Day 61 (Oct 25)


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 patients experience after getting a bone grafted back onto their skulls.  The surgery required a trache with an inflatable cuff to protect Tobias' lungs.  This cuff is still in place and even though the cuff is no longer inflated, it takes up more space than his non-cuffed trache from before the surgery.  Tobias is having more trouble breathing and speaking, and we suspect the larger trache to be the culprit.

The lead respiratory therapist came to check on Tobias and informed us that they are planning to remove the trache tomorrow.  We would have pushed for exchanging the cuffed trache today, but since the entire trache should be gone tomorrow, we don't see the point.  Tobias received a minimal amount of oxygen this morning because the oxygen values in his blood were on the border of what the nurses find acceptable.  Anything above 90% is acceptable and when the value falls below 90%, the nurses adjust their standards and accept anything down to 88%.  When the level falls below 88%, the machine monitoring the oxygen sets off an alarm and the nurses don't get to re-evaluate what they're willing to accept.  This morning Tobias was teeter-tottering between 89 and 91 so he was given a supplemental oxygen line.  I'm not sure how the extra oxygen is measured but the meter goes to 15 and Tobias was given 0.5.  I believe the measure is liters of oxygen per minute so he was given half a liter of oxygen per minute to supplement the oxygen he was extracting from the room air.  This did the trick and his oxygen level went into the mid-90s.

I missed the first OT session because it started before visitors are allowed into the hospital, but when we arrived the speech therapy session was in full swing.  The therapist was working on getting Tobias to open his mouth and was pushing him to separate his teeth by 10 cm.  Tobias was struggling at 10 cm when at once he found the next gear and opened his mouth to 15 cm and held it open.  This is important because it allowed the speech therapist to thoroughly scrub Tobias' mouth.  His teeth got a complete cleaning and the thrush on his tongue was roughly assaulted with Nystatin, a medicine used to combat fungal growth in the lining of the mouth.  I was excited because we have been wanting to get rid of the thrush, however the ST tamped down my enthusiasm telling me that thrush is resistant and may take 10 - 14 days to eliminate.  I was hoping it would be more akin to wiping off a messy countertop.  At least with Tobias opening his mouth so wide, we have the access to fight the thrush.


The speech therapist worked with Tobias in his bed, but we got Tobias in the sling and prepared him to transfer to the wheelchair for his first PT appointment.  This is the first PT appointment where the PT was alone so Tobias stayed in the wheelchair.  Tobias' movement was similar to his pre-cranioplasty days, which the PT took for a success.  The PT visit was a success for Tobias' breathing as well.  By going from the bed to the wheelchair and back, the trache must have shifted in his throat and provided more room for air because after the PT session, his oxygen levels were in the mid-90s without any supplemental oxygen and the oxygen line was put away for the rest of the day.

The afternoon therapy session was a joint PT/OT session.  Tobias was sat on the edge of a low, padded table that was lowered until Tobias' feet just reached the floor.  One of the therapists sat behind Tobias on a large exercise ball and supported his head and shoulders so that Tobias could sit.  She let Tobias support himself as much as possible and assisted when he slumped over too much.  The OT stood in front of Tobias and kept him from falling forward.  The OT also worked with Tobias' arms and legs to stretch them.  The exercise was to get Tobias to hold his head upright on his own, which Tobias was able to do for short time before his head slowly drifted off to one side like a cherry sliding off a scoop of ice cream.  They also wanted Tobias to engage his core and sit by himself, but he is still too weak to do that unassisted.  Tobias was able to move his right arm from resting in his lap to about two inches in the air.  He can also open his right hand fingers about one-third of the way from a fist to a handshake position.  The movements are delayed and slow.  There is still no movement in his left arm or hand, but I think he is getting closer to finding these controls somewhere in his disarranged brain.  A few weeks ago his left arm was completely inert, but I think I detected a small shudder in his arm as he struggled to engage it.  The therapist bent Tobias sideways and put his elbow on the table so that he was leaning to one side with his arm supporting him.  Both of them encouraged Tobias to push himself up from his elbow.  Most of these exercises seem hopeless at first with no hint of success, but the more Tobias invests in engaging his brain and muscles the closer he gets to cracking the code and building the strength to perform the requested task.  It seems like a miracle now that Tobias can lift his arm intentionally.  I'll ask Tobias to reach up and take my hand and at first it's as if he didn't hear me.  His arm lies still in his lap or at his side and there is nothing in the room but silence and eyes on Tobias' right arm.  Then after a few seconds there is a small shift in his forearm and slowly like a great machine struggling to break the grip of being parked for a very long time, his arm moves in place.  It looks like he is only going to manage the initial side-ways shift and that some invisible chains will hold it down, but then the arm gains slow, but steady momentum and he reaches up a few inches before reaching the end of his power.  This all plays out so slowly and weakly that I never know if he will be able to do it.  But it is a miracle to me when he does.



Tobias is a long way from the end of his brain-bleed journey.  I wish he were surprising us daily with new and unexpected abilities and endurance, but we've never been led to believe that it will be a quick journey.  We don't know if it will take years for him to be able to walk or talk normally, or if, indeed, he will ever be able to do any of those things.  For now we are working to plug all of the holes that were unnaturally cut into him and build his endurance enough to communicate with us and engage his muscles again.  The last several days have been positive and we look forward to getting the trache removed tomorrow.  It wasn't long ago that his life was in danger or that he was storming so hard that it was difficult to watch him.  We are grateful to be on a path that looks promising and safe.

Hope over fear.

Comments

Popular posts from this blog

"Embracing Change: Finding Strength and Hope with Tobias

Im Heute im Jetzt - unser tägliches Leben :)

" A Journey of emotional changes while healing a brain"