Day 38 (Oct 2)

 

Emily and Chris drove us to the hospital because they are going to use the car today.  Katja and I walked around the garden in front of the hospital with Eloise to give Em E and Chris some time to visit Tobias before they began the rest of their day.  It turns out that we were all in luck because Tobias had a physical and occupation joint therapy session in the gym where Emily saw me and Katja in the garden.  The PT knows about Eloise and suggested that they bring Tobias outside to spend a few minutes with her.  Because of the minimum age of 18 years for all hospital visitors, this would be the only way for Eloise and Tobias to interact.  Eloise celebrates her first birthday in two weeks.

With everyone masked up except for Eloise, we spent 15 minutes with the PT and OT in the hospital garden.  Tobias was his usual drowsy self, but kept his eyes partially open for most of the visit.  The OT had some things for Tobias to feel and smell.  Part of his therapy is to engage different senses and so we brought some German Knackwurst (sausage) that we received in a care package from friends in the Vaterland.  Tobias loves Knackwurst and we put it under his nose to smell.  Repeated exposure to familiar sights, sounds, touches and smells will help his brain connect to the memories these items represent.  Eloise unfortunately retracted into her shell of shyness because of the two strangers in the group.  She even seemed tentative around Tobias, although, except for the mask and funny helmet, he looked like himself.  I think she, even at less than one, sensed that uncle Tobias wasn’t quite right.  The PT knows us from a few previous visits and asked if we felt comfortable taking Tobias back to his room by ourselves.  We were happy to spend more time with Tobias as a family and had no qualms about watching him for signs of distress.  The PT let us keep the portable monitor to track his blood oxygen levels and heart rate so that we wouldn't have to rely only on visual clues.

Today was warm with a slight mountain breeze whose coolness contrasted agreeably to the heat of the sun.  It felt right to be together with everyone in our immediate family (except for our youngest son who is away at college).  We missed not having Sebastian here, but having the rest of us together felt like we had been playing one of those games where you struggle to get the BB through the maze to land in a center hole.  Finally everything came together and the BB dropped surprisingly into the hole.  I wanted to hold the game very still to enjoy the victory as long as I could.  It was the first time we have been physically together since Tobias' injury.  With the strangers gone, Eloise was braver and jabbered more to Tobias in her private language.  I took her on my arm and she followed my example to stroke Tobias on his shoulder.  We posted Tobias' wheelchair so that he felt the full radiance of the sun for several minutes, but kept him shaded from direct sunlight for most of the time to protect him from overexposure.  We took some family pictures and then Katja and I brought Tobias back to his room.

We aren't qualified yet to use the hoist to put Tobias in and out of bed.  The nurse's aid asked me to fit the hoist sling down Tobias' back when he leaned Tobias forward.  The sling is made of woven polyester fabric and has a wide section that fits onto Tobias' back with a flat hood section on top to support his head.  The sling is fit behind his back down to his waist where it divides into two leg sections.  Each leg section wraps outside his hip and is threaded up in between his legs.  There are re-enforced straps at each of the shoulders and at the end of the leg sections.  The hoist motor has a band of seatbelt material that lowers a crossbar the size of a large hanger with metal double hooks at each end to fasten the sling straps.  The shoulder straps are attached to the closest hook on the crossbar, but the leg straps are crossed so that the left leg strap hooks to the right side of the crossbar and vice versa to provide extra stability to the sling when a patient is mid-air.  The patient sits in the widest part of the sling with the head supported and the legs hanging freely.  

There are two tracks built into the ceiling that run parallel to the bed, but are further apart than the width of the bed.  These two tracks are connected by a metal beam that rolls along the length of the tracks and also has a track running along its length.  The motor is mounted in the metal beam’s centerline track and can run the length of the beam.  Since the beam can run the length of the bed along the ceiling tracks, the motor can move to cover any part of the bed.  This is how the therapists can hoist someone from a wheelchair at the side of the bed and move them to any position in the bed before lowering them down again.

The aide asked me to help so I positioned the sling behind Tobias as the aide pulled him forward in the wheelchair while supporting his head like an infant.  The leg sections are threaded around the side of his hips, under each leg and up through between his legs.  The straps are connected to the hoist's crossbar and Tobias is lifted into the air by the nurse's aide using the up and down buttons on the control.  Once Tobias' backside clears the wheelchair armrests, his legs and catheter bag are moved past any obstacles and the sling is pulled where the aide wants to position Tobias.  I held Tobias' head steady during the lift-and-move procedure and when Tobias was in the right spot, the aide lowered the sling and we reversed the process to remove the sling.

Tobias was in for a surprise today as well.  For the first time in five weeks he was given a proper washing.  The bed baths are a critical part of his sanitary care, but a bed bath isn't as effective at getting someone clean as a shower.  An hour after we had planted Tobias safely back into his bed the aide brought the special "shower wheelchair" and we transferred Tobias again from his bed to the chair.  This time, however, his destination was the in-room bathroom where the shower was run to body temperature plus a few degrees.  The aide and I removed all of the hospital gear and the aide plastic-wrapped his IV, ankle bandage and feeding peg.  The trache wasn't wrapped, but the aide took care to avoid direct water contact and dried him carefully after the shower.  Tobias was naked in the chair and ready for his shower.  Tobias was soaped and scrubbed to a clean that he hasn't enjoyed for weeks.  His sensitivity to heat must have experienced a great relief under the running shower water.  I especially enjoyed, for some reason, the sight of Tobias getting shampooed again with J&J no more tears shampoo.  I helped to dry Tobias and we got him back to his bed.  I was interested to see how his heartrate would react and for the next hour noted that his heartrate stayed in the 70s.  We are grateful for the young aide who was willing to give Tobias a shower.  We've asked before and have been put off for different reasons.  I understand that it is easier to give a sponge bath in bed and that some of the nurses and aides have not had the same physical strength and stamina of the aide today, however, we now know that it's possible and see the multiple benefits for Tobias.  He is cleaner, cooler, experienced the sensations of the shower and got to leave the confines of his bed.

Tobias developed thrush, which is a fungus on the tongue, during the five weeks where his mouth was shut off from the rest of the world.  The speech therapist has tried to get Tobias' mouth open so that he can address the thrush.  We don't know how uncomfortable the thrush is for him, but we know that it isn't helping him.  The only time we get a good look at the thrush is when he yawns, which he is prone to do when stretching or moving.  Knowing this Katja asked if there was a medication that could be given to remove the thrush and the doctor has prescribed some topical medicine which is basically a powerful mouthwash that can be swallowed in small doses without being dangerous.  The nurse gave us permission to swab his tongue since we are here most of the time and his yawns are largely unpredictable.  Katja prepared the swab and stood at the ready while I ran him through his range of motion stretches.  Sure enough she was able to swab inside his mouth during one of his great, slow yawns three times.  The medicine must taste disgusting because Tobias reacted each time and on the third time he literally shook his head like a baby tasting a lemon for the first time.  It was the most lifelike sign he has given us.

Tobias was sleepy for the therapists this morning, but he has had his eyes open for most of the afternoon.  This is a big change.  I'm not sure what we should be doing with him.  Part of me wants to talk to him all the time and work with him like we have seen the therapists do.  Part of me wants him to continue to rest.  It is a relief to see him more awake and alert, but I have to keep reminding myself that he has brain damage and can't do much.  He sometime looked around today with both eyes open, looking pretty much like his old self.  I halfway expected him to say something annoyed or funny.  I feel guilty writing this blog right now because his eyes are open and I want to help him while he is alert.

Katja and I walked over to an adjacent hospital's cafeteria because ours is closed and we forgot to make sandwiches today.  The hospital has a terrace that opens to nature and is a lovely place to share a meal.  We enjoyed our time together and Katja mentioned on the way back that she used to feel like she had control over her life, but now she feels like she doesn't control anything.  We talked for a moment and realized together that we can't control many of the things in life that happen to us, but we do get to control the decisions we make.  This helped us accept our current situation for today by knowing that we still have control in our responses and our outlook.  We won't be able to effect a particular outcome for Tobias, but we have the strength to decide on a future that gives Tobias the best life available to him.  I've had multiple conversations with friends and family in the past few weeks who feel like they can't empathize with our pain because they haven't suffered a situation as dire as Tobias'.  I'm not sure how to feel about that, to be honest.  I think to some degree that happiness and heartbreak are relative and that, mental illness aside, we are all as happy or as sad as we allow ourselves to be.  Life can be hard and we all struggle.  We all need help and we can all give help.  You don't need to have suffered on an equivalent scale in order to comfort someone.  Wanting to help is enough.  That's all the authority you need.

Hope over fear.