Day 58 (Oct 22)

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 jumping back and forth between pristine autumn splendor and cold, rainy fall.  Today splendor was on the menu and we looked forward to getting our fill of it the few hours that we had available.  We've seen people up on the mountain and my nephew recommended a trail within walking distance of the hospital so our plan was to park at the hospital and then return in time to receive Tobias in his new hospital room.

Marcel Proust was a French poet who wrote a poem about how tasting a cookie, called a Madeleine, involuntarily swept him back to a happy childhood memory.  This morning Katja created a "Madeleine" moment for me.  Given our rare open morning schedule, we indulged in a larger than normal breakfast.  I made bacon, eggs and toast, and Katja cut up tomatoes and oranges into healthy slices.  Given Tobias' operation today, he was hovering in my thoughts and so it doesn't surprise me that when I put the orange slice in my mouth like a new set of teeth, I was involuntarily swept back to the many times I have seen Tobias and his friends enjoying oranges in the same way.  Juicy orange slices are the American gold standard for children's sport snacks and I have cut up many dozens of oranges in preparation for soccer and baseball games.  Today I saw Tobias' smiling face, red from exertion, laughing with his buddies and all of them greedily eating orange slices and throwing the half-pulpy peels in the general direction of the garbage bag.  It is a happy memory and makes me grateful for the immeasurable gift of love and fatherhood.  It also reminded me of my wishful intentions that Tobias' face will once again light up with excitement and effort and that he will get to experience the fulfillment of loving and caring completely for his own children.

After breakfast we donned our hiking gear and set off.  It felt vaguely oppressive driving through the parking garage of the main hospital again.  The parking garage goes underground and is dark and cramped with a low roof and tight corners.  I remember how spiraling downward into a shadowy world, stressed from the risk of hitting another car or scraping a concrete barrier, used to add to the menacing feeling waiting for us in the hospital.  It brought back memories of when Tobias' life force was like a top spinning on a narrow ledge and we didn't know from day to day whether it would stay on the ledge or fall off and be gone.  I took a moment to process these feelings and reached the encouraging conclusion that this darkest chapter so far of Tobias' story has now been closed.  We turned the page some time ago to follow his adventure in a new and more promising direction.  I still remember the dread that accompanied that time, but it feels like a movie or campfire story that only has the power to chill for a passing moment.

Katja wanted to walk through the maze of hospital corridors to get as close a possible to the hiking trail before venturing outside.  These are paths that we know well and when we passed the Neuro Critical Care unit we decided, almost on a whim, to go inside and inquire about the progress of Tobias' operation.  He should have been under the knife already and it would be helpful to get an estimate of his return time so that we could plan accordingly.  The woman at the ICU counter was helpful and immediately recognized Tobias' name.  She had just spoken with Tobias' neurosurgeon not 10 minutes prior to our arrival.  This meant that Tobias wasn't in the OR and that our wait time to see him after the operation would be significantly longer.  While the nurse was searching the hospital computer for information about our son's whereabouts, Tobias' neurosurgeon walked by and stopped to greet us.  We didn't bother to ask why the procedure had not yet begun, but were glad to hear from the doctor that Tobias' condition after the operation would not be particularly serious and that he wouldn't be staying in the ICU at all.  He was going straight to the acute care unit after the cranium was complete again.  By this time the nurse had located Tobias and the doctor offered to take us to his pre-op location so that we could wait with him until the time of the surgery, which was still 30 - 60 minutes away.

It worked out well that we got to see Tobias before the procedure.  He was in a small room waiting his turn to be operated on.  A nurse was with him when we arrived, but left soon afterwards to see to other patients.  Tobias is aware of his surroundings and the goings-on and we believe that he was very concerned about what was happening.  He was storming like back in the difficult days, with the exception that his heart rate was still below 110.  He body was tense and he was sweating profusely.  This had alarmed the nurse and his doctor asked several questions of the nurse and us about his condition as of late.  I was confused because he hadn't stormed like this for several weeks, except when he had been given amantadine, but here there was no chemical catalyst for storming.  Katja and I believe that his concern for the impending operation created the current storm.  We cared for Tobias like we had been doing for the past several weeks.  We removed the blanket and sheets, and pulled the hospital gown down so that his body heat could dissipate easier.  We bent his arms and knees several times and put pillows under his legs so that his knees were elevated and his heels bore no weight.  I employed the new trick of washing his face with a warm washcloth and explained to him that the operation was not risky and was going to help him recover.  I expressed my full confidence in the doctors and Katja comforted him when I had run out of words.  Tobias rewarded our efforts by dropping his heart rate into the 70s briefly, but it was an evenly matched battle between us and the storming.  His heart rate increased again and eventually passed the 100 bpm mark, but we were able to parry and drop it again.  The sweating didn't return and his body wasn't as rigid, but his heart rate was a constant nuisance that we couldn't fully tame.  His body language was calmer though and I know he was more comfortable for our presence and efforts.  When the OR nurse came to assess him one last time, he clearly mouthed his name when she asked him who he was.  That was a special treat for me since I haven't been present when he said his name yet.  He clearly mouthed his full first name.  To-bi-as.

The last visitor before the OP was the anesthesiologist.  He asked many of the same questions.  What is the patient's name?  What is the operation?  What side is the cranioplasty on?  I guess they wanted to make sure they didn't put Tobias' cranium back into the wrong person or mistakenly take Tobias to the delivery room.  Apparently our answers were acceptable and the anesthesiologist himself wheeled the bed out of the room and down the hall.  By this time, Katja was feeling out-of-sorts so we decided to return to my sister's home.  I'm not as affected by seeing Tobias in such situations, but I think that there is something about creating a human in your body over nine months, bringing said human into the world and raising them from baby to adult that makes it very difficult to see them in potentially life-threatening situations.  This procedure carries a very low risk, but any risk sounds threatening to Tobias' loving mother.  At the risk of sounding chauvinistic, I am told that overprotection is a trait very common in mothers.  I guess the mothers who were not overprotective had their DNA weeded out of the gene pool long ago when their children got to close to a sabre-tooth tiger or played too frequently with lawn darts. 

I returned to the hospital at 5pm, but Tobias was still in the recovery room.  The NAC (Neuro Acute Care) ward, known as "the floor", had already set up a room for Tobias and they allowed me to wait for him there.  After 45 minutes Tobias arrived, but he was still groggy from the operation.  He gave me a thumbs up on the question of whether he prefers the US over Germany and he mouthed "yes" and "no" appropriately to questions after he had another hour to recover from the surgery drugs.  One of the nurses from the Neuro Critical Care knew that Tobias was operated on today and came by after her shift to check in on him.  This means a lot to Katja and I that Tobias has been lucky enough to have such wonderful nurses who continue to show concern and care long after Tobias has left their charge.  She stayed for over an hour, I think, but the time went quickly because it was enjoyable to catch up and update her on Tobias' progress.  There was also a flurry of activity during her visit because Tobias' bed was broken and the nurses' call button was in a permanent alarm mode.  Every 10 minutes a nurse or an aide would come in asking why we pushed the call button.  Eventually a new bed was sorted out and a bevy of nurses arrived to move Tobias from one bed to the next.  The procedure involved a long, wide board, that the nurses placed under Tobias and then pushed from one bed to the next.  With Tobias on the new bed, he was held firmly in place and the slippery board was pulled out from under him.  The collection of nurses left, but our ICU nurse stayed on to double check that everything was ship-shape for Tobias.  It is a pleasure watching a competent professional go about their craft quickly and precisely. We finally said our difficult good-byes and ten seconds after the door closed an alarm went off.  One of the IVs was pushed off to the side and had not been re-connected.  The alarm trips if the disconnection continues for too long.  I was just thinking about whether to hit the nurse's call button or go out and fetch a nurse, when the door opened and Tobias' ICU nurse appeared.  She had recognized the IV alarm half-way down the hall and returned to make it right.  I told Tobias after she left that he was a lucky guy to have such a good friend to take care of him.

Humpty Dumpty.  Put back together again.

The night nurse came in later and gave Tobias his medications.  Due to the operation he will be given some oxycodone again for pain and I'm sure it will keep him comfortable through the night.  Tobias' trache was used to ventilate him during the operation and when he came back to the room, the trache was open with a small plastic semi-sphere, the size of a ping-pong ball cut in half, loosely covering the open trache tube.  The semi-sphere was connected to an oxygen line to ensure that Tobias received enough oxygen and due to the open trache, Tobias’ breathing was following the path of least resistance through the open tube. This made it easy to hear the raspiness in Tobias' breathing.  He had some mucous or liquid in his passageway that he was having difficulty clearing.  I asked the nurse to suction him and she replaced the semi-sphere with a T-piece and suctioned Tobias.  Tobias reacted the same way as he always does from suctioning and convulsed with his whole body by bending at the waist, raising his shoulders and knees toward the ceiling.  The nurse extracted mucous along with some blood.  She asked me if the blood was common and went to get the charge nurse when I confirmed that it was not.  The charge nurse wasn't concerned because during the surgery the medical team has to exchange the trache with a version that includes an inflatable cuff to ensure that nothing gets into the lungs during the operation.  It wasn't much blood and so there was no cause for concern.

Right now it is 10:15.  I'm late getting the blog published, but Tobias had an eventful day that I wanted to witness to its end.  He is now resting peacefully.  The oxy worked its magic and his heart rate dropped from 120 to the low 80s.  We can rest comfortably in our beds tonight knowing that Tobias is doing the same in his.

Hope over fear.