Day 23 (Sep 17)

Bottom line: Best day so far for Tobias.  He responded with a thumb movement three times in a row for the first time and he blinked on request multiple times.  There were a few moments during the day where his eyes were clear and searching, but he still doesn't track items.  He is comfortable in his room in the Neuro Acute Care unit and the nurses removed some of the original IVs that had become messed up and painful so his body has less stress to deal with.  He appeared to rest comfortably much of the day.  His vital signs continue to improve and it feels like he is closer to communicating to us at least in fleeting moments.  His muscles still tense up for long stretches and his pupils are unresponsive, but he isn't sweating as much and the nurses and doctors talk about him moving beyond the storming.  We're counting today as a win.

Detail:

Tobias has been in the hospital for over three weeks now.  That seems hard to believe.  It's like I just checked my time wallet and realized that I've been robbed.  I don't understand where the time has gone.  It's a strange realization.  Tobias' body is holding up well despite his lack of movement.  The nurses use pillows to help distribute his weight in the bed and they have a schedule of moving the pillows every two hours.  This has worked well.  Tobias sweated a lot during the worst storming so his whole body was wet and soaked the sheets.  The nurses have been great to keep him in clean linens and they work hard to keep his body clean and dry.  This is important to avoid rashes and other skin complications.  One of the worst risks is skin injury caused by lying motionless for days.  Wet skin becomes soft and is more prone to deterioration from the body pressure exerted on it.  Tobias' body is most vulnerable where his skeletal structure meets the bed because the bones focus the bodyweight on the small area of contact between skin and bed.  The nurses avoid these bedsores by shifting his positioning and rotating the pillows frequently.

The original IVs have started to become a problem for Tobias.  In particular, the tissue around the IV on his right foot was looking sore and tender.  His feet normally wear boots to keep his feet properly aligned to his body and to distribute his weight across a larger area of his foot.  There is a plump pillow boot that is soft and comfortable.  It helps distribute the weight evenly over a large section of his foot.  The other boot has a rigid structure with thick Velcro straps that pull the two sides of the boot together so that the foot is forced at a 90-degree angle to the leg as opposed to allowing Tobias to point his toe.  The boots are rotated from foot to foot every few hours so that each foot gets the available benefit of either boot.  The problem with the rigid boot is that one of the Velcro straps crossed over the IV on his foot and even if the strap wasn't tight, it still pushed on a plastic part of the IV and caused it to press into his skin on the top bend of his foot.  Over the three weeks, the IV caused a wound and Tobias' nurse had the IV removed.  He has a dressing on the injury now.  It reminds me how important it is to actively think about what might be a problem for Tobias.  The nurses are careful and observant, but no one knows Tobias like his mother and I.  I saw the IV pressed into his foot and thought that it must be painful, but I figured the hospital knows best.  Tobias wouldn't have had to suffer the wound on his foot if I had spoken up when I saw the boot was weaponizing the plastic end of the IV.  Sorry, Tobias.

The IV in Tobias' forearm was also no longer in good condition.  The line puncturing his skin entered the vein just below the surface which didn't give the IV much surrounding tissue to keep it in place.  After three weeks of arm moving, pillow adjusting and body shifting the IV was coming loose and created a larger ingress that had started to leak.  It had been repaired twice and was no longer serviceable.  Tobias' nurse considered poking him again to replace the defective IV but decided to call a paramedic to administer an ultrasound IV.  This procedure puts the IV deeper into the arm where a better vein can be found.  It uses a longer catheter and has thicker tissue surrounding it so the IV is more secure.  The process took about 15 minutes because the paramedic had a difficult time finding an appropriate vein.  The paramedic uses an ultrasound machine that shows a live picture of the inside of the arm so that the needle can be guided into the proper position deep below the surface of the skin.  Tobias' nurse held his arm steady and the paramedic positioned herself motionless on his upper arm as she painstakingly set the IV by watching the needle on the ultrasound screen slowly traverse the muscles, tendons and blood vessels in his arm.

Tobias seems to have better hours in the morning.  He's never been fully cognizant, but he seems closer to consciousness at the start of the day.  This morning he opened his left eye almost fully and his right eye about a quarter.  He looked around and appeared to react to noise by looking in the direction of the noise to identify it.  Buoyed by this apparent alertness I asked him to raise his thumb, which he promptly did.  This thumb movement was more significant than the feeble twitches from yesterday.  Unfortunately, he didn't repeat the thumb movement upon request fifteen seconds later.  His eyes were still active and clear so I asked him close his eyes on the count of three.  At the equivalent count of 2.75 he blinked his eyes.  This easily could be just lucky timing so I repeated the experiment two more times with the same result.  At a short beat before I hit three he blinked his eyes.  This was exciting for me.  He doesn't have long brushes with consciousness, but these small wonders show he is drawing closer and give me trust that he will emerge from this distant slumber.

The PT guy came while Katja and I stepped outside for lunch.  The weather here is still warm and Tobias' room is cold and dark.  It is nice to get out into the sunlight and warm air to eat the sandwiches that we prepare each morning.  It’s like getting a comforting hug from nature.  When we returned, the PT was just getting Tobias back to a supine position from the sitting position used for his therapy.  He was impressed at how strong Tobias is and mentioned that the rehab hospital is looking into getting Tobias into a program for promising, but unresponsive patients.  It was nice to hear that Tobias is on their radar and is potentially going to get extra help.  I was intent on checking Tobias' responsiveness because he is often alert and responsive after his core has been exercised.  As expected his eyes looked clear so I asked him to move his thumb, which he did with a complete extension.  The PT saw the thumb move and drew in closer with visible excitement.  Katja didn't see Tobias' thumb move, but she knew that it was significant because of the PT's reaction so she quickly joined us around the bed.  These moments are like breaths of air after swimming underwater for a long time.  I told Tobias that his mom didn't see his thumb move and asked him to move it again.  For the first time that I remember he made two bold thumb movements in a row.  Of course, I tried a third time and again he responded with a clear thumb gesture.  On the fourth try, however, he didn't respond, but we witnessed a new record and our relief and joy were exhilarating.  At these infrequent happy junctures, we perceive suddenly the weight of the stress that we have been under only because of its abrupt departure.  It's like the threads of doubt and worry that are slowly wound imperceptibly around us during the hours of watching Tobias' inert body are suddenly burst and we are free again.

The PT was happy with Tobias' general condition.  He's the one who educated us on the dangers of wetness for the skin and how to check for rashes and pressure points on Tobias' body.  He even went so far as to pull the sheet under Tobias taut to remove any folds that Tobias could be laying on.  He reported that Tobias had good flexibility still, but that we need to continue to take him through the range-of-motion exercises to protect him from permanent tightening of the muscles, tendons and tissue, called contractures.  This occurs when patients don't move and the muscles get locked into place.  So far Tobias is doing well and has no risk areas.

The move to the Neuro Acute Care (NAC) has done Tobias good.  We were concerned about leaving the ICU, but Tobias made a large step toward wakefulness today.  The nurses don't check him every hour with the pupilometer, which visibly irritated Tobias, or perform the painful pinch response tests.  The hallway is much quieter in volume and traffic.  The room is still private and has much larger windows to let in natural light for us while still keeping Tobias in relative shade.  It has been a good move for Tobias and for us.  He continues to make progress as I documented above.  He also made more facial movements and Katja is convinced that he smiled at her twice during the day.  The swelling in his brain continues to recede and the nurses are reducing his medications.  He has been off the ventilator for almost three days and his blood oxygen reading (SpO2) has been at 100% for much of the day despite his T-piece oxygen mix being lowered from 30% to 28%.  Everything is marching in the right direction, but the nurses caution us kindly that Tobias is still weeks, potentially months away from "waking up" and, of course, the elephant still in the room is how much damage Tobias' brain has suffered.  This is the reality check limiting the amount of joy and relief that we allow ourselves.  Sometimes, however, we forget this awful stone in our shoe and we embrace the lightness of the moment, bathing in optimism, letting it wash away anxiety and fear, leaving us feeling clean and new.

Hope over fear