2020 09 21 surgery

 2020 09 21 Monday Day 46

Monday morning (Monday) Alex was able to sit up along the side of the bed as he had done Saturday and Sunday. He still requires a lot of assistance, but he appears to look forward to sitting up. Saturday we sat up 3 or 4 times for about 4 minutes each time. Sunday he sat up 10 times for 5 minutes or longwr per sitting. Sunday I would ask him if he wanted to sit up, he heard me and he would then bring his head and chin to his chest and lift his right leg as if he was making the attempt to get up. Sunday he was up and at his bedside well over ten times.  He was able to sit upright at the edge of the bed while I held his waist with both of my hands, one on each side.  He would tire quickly, his chin would drop to his chest. I would ask him to lift his head and he would. He would raise his head up and move his head left to right as if he were trying to look around the room. He was making the attempts to look around the room but had no focus. I had music in the background on the tv and the bedside hand held speaker.  The music appeared to be the distraction and he appeared to be able to hold his head up a little while longer with the distraction.  If I counted, he anticipated the numbers and would drop his head exactly 1 number before the number that we spoke of.

Monday afternoon (4pm) Alex went into surgery and Monday night 10pm Alex was out of surgery and back into the Intensive Care Unit for recovery. At 10pm when the surgeon came to talk to us all that I wanted to hear was that Alex was ok and that things went well and without complications. The surgeon sat down and said that all went well and that Alex was in the ICU room. He stated that the piece of area that was to be replaced had to be done in three sections due to its size. It required more plates, screws and adjustment time than they had previously anticipated. The surgeons took longer to stitch him closed due to the amount of stitching, they chose a specific stitch over the conventional... and.... blah blah blah....all I wanted to hear at that moment in time was that my kid was safe, had his skull back on and was going to be alright.  The surgeon continued to speak and I now have his notes written down elsewhere....but then at that moment I just wanted to hear "Alex is alright and you can see him now".

The surgery prep and holding room

Was cold, there was this ridiculous draft that blew the curtains several feet in different directions when the doors where open. Alexs space was directly next to the doors and so the curtains kept slapping against my body as I stood bedside. I held Alexs hand while the sedation team came, spoke, had me sign the dotted line and waited for questions. The neuro surgery team came in and did same, the nursing team came in and did same. I knew almost everyone on the surgery team, They had done the initial surgery and had visited our room every morning at 6am for the past forty something days. The surgery team spoke and hung around. The surgery team now felt a connection, they knew Alex before, after and had seen him everyday fir the past forty something days. The team had seen my fear before, had seen my frustration, have heard my comments about not waking Alex up every morning at 6am to piss him off and then walk away. They heard me say "there are 10 of you here. You wake him...and one of you WILL be held hostage to watch him while I sleep!". They hung around and I could feel that they were searching for words to console me. Almost all if them came iver to me one by one and gave me an eye to eye and let me know that he was in good hands and that they were going to do thier best.  I wished them all good luck and begged God to bless them. The surgeons walked away and anesthesia crew was bedside. They gave Alex a little sedation and he was sleepy. I gave him a kiss on the forehead and told him I would see him upstairs.  The room was cold, windy and monotone color wise in my eyes.  It may have had color, but then and there I saw no color.  I was upset, I was worried, I was nervous, I was anxious...but all I could do is pray for the right people at the right time and ask God to give them all courage, knowledge, stamina and steady hands. I begged God to look over it all.  I had been here forty something days ago..."please lord make this time different than the last". I watched him being rolled away again this time like I watched him forty something days ago. It hurt to watch, it broke my heart to watch, my hand let go seconds ago but my heart and eyes couldnt. Some nurse kept talking to it...something about her showing me the way out, the way to the parent station blah blah blah. My eyes and heart were on my kid as he was being pushed away, my inner voice and conscience was talking to God. As the doors closed between Alex and I the voice if the nurse became audible but didn't yet make sense. I nodded to whatever she said and followed her out of the cold, windy, blurry, colorless room.

While Alex was in surgery, Mom and I waited in Surgery Parent holding areas until we were the only ones there.  While Alex and I were in the cold, windy, blurry, colorless room, Bela and a chaplain had sat in a corner covid 19 space and waited on me. I took a little longer than expected so she must have had to get somewhere else. At this pont in time I couldnt be in any corner, I skipped over my designated spot and searched for one with window natural light and sky view.  I sat and prayed the rosary. At times like these one cant focus much, I kept getting the flashbacks of Alex rolling away and the doors closing between us. As time went by and as the hours past the areas that mom and I were waiting in became dark, cold and lonely. As time went by other families left one by one. It became somewhat frightening and nerve racking as employees, nurses and liaisons left one by one until there were none. By 7pm Everyone was gone, there was no one around for us to ask or request updates from. We felt as though we missed the call about going up to the ICU to greet our son. I left my covid 19 space and walked the halls while peeking into other rooms other spaces in search of other families, other parents, anybody.... any sign of others in equal anxiety would have reduced mine . As I am walking I am thinking to myself.  "Here we were again....last in line..." I was feeling all alone...in this large emptied out lonely place that was now feeling  darker, colder, scarier and dungeon like. In someone elses eyes they would see that in fact there were bright lights, there were windows, it was very well lit and through the windows anyone could see the street, the traffic, the surrounding buildings, the weather, but even so, right here, right now, This was the "oh crap moment". This was the moment when the sitting in our designated parent recovery covid 19 space in quiet prayer turned into "anxiety driven mind torture". We waited for the hours that felt like days. "What is taking so long? This can't be good. Why haven't they come out to talk to us? Something must have gone wrong". Ugh the damned questions!!!!! We all know that when in doubt...well...yup...people think the worse case and they ask the questions. As a parent whos anxiety and blood pressure is through the roof I turn to the paintings on the wall, the size and shape of the floor tile, the pattern on the carpet....anything...anything to take my mind off of the "anxiety driven mind torture". I try to pray, but find myself babbling in my head.

Alot of time went by...8pm and no one around.

Mom went up to the floor while I waited within the covid 19 wait bubble that I was assigned to. Forty minutes later mom texted that Alex wasnt on the floor yet but on the way. So I headed up. As I was leaving the lower level the chaplain was arriving. She followed me up in search of Bela and in search for Alex answers.