The Long Goodbye - Part I

I now have first hand knowledge of what a mixed blessing really feels  like.  

Pretty early in this saga Jeremy began responding during Neuro Tests.  Cruelly, they would pinch and twist the skin near his collarbones on both sides and on the  inside of his thighs.  Hard to watch, I swear I wanted to slug those people sometimes, but they were doing their jobs, important and difficult work.

Jeremy responded to this pain stimuli by lifting his right leg (he was paralyzed on the left side, as the bullet went through the right hemisphere of his brain).  He would squeeze your hand with his right hand if asked.  He could do a thumbs up on the right side.

This was a positive sign, and yet heartbreaking.  Because of his injuries, we would never get to the other side of the initial damage to see what might be possible for Jeremy neurologically.  He was going to die even if he sat up in bed and began singing, he could not make it.

I still look back and wonder why in the hell he was in the hospital 7 days when we knew from day one that he couldn't live.  Part of it was that his first neurosurgeon wanted to give Jeremy the 72 hours that his brain would continue to swell.  At the end of that time, as the swelling went down we could see where we were.  They were amazed that he could move at all, let alone respond to requests.  

In addition to that his girlfriend did not want to let go.  Her parents asked me to give her more time to accept the situation, and I did that, but I knew I wanted my son's suffering to end and encouraged them to help her accept the reality of his situation.

She felt Jeremy had signed medical directives during a recent hospital stay at a different hospital giving her the ability to make medical decisions for him. Her family went so far as to call the hospital impersonating his sister in law (he did not have a sister in law) and a second call made as his sister (he also did not have a sister).  I checked with the hospital and was told about their phone calls. The hospital found no medical directives for him. 

In an attempt to gain control his girlfriend went behind my back to the head nurse and told her that Jeremy didn't want or have a relationship with his father or Tyler or I and we were upsetting him by visiting him and blah, blah, blah.  

While I was more than willing to make decisions with Jeremy's girlfriend, it became clear that she was unable to put Jeremy's interests ahead of her pain and desires.  While I felt enormous sympathy for her, bottom line, she wasn't capable of making good choices let alone good decisions.

Her family became abusive towards me and, as happens in so many of these types of situations, unnecessary drama took place that made the situation that much worse.

The hospital social worker met with me at the request of the Trauma nurses who were concerned about her behavior and that of her family.  The Social worker of course was upset by what was transpiring and said, "You know, you can just ban them from seeing him or having access to his medical updates."

"I can't do that to his girlfriend, Jeremy wouldn't want me to ban her and clearly she's on the edge and probably needs the support of her family."

Thank God, grace comes when you need it most.

What ended his hospital stay was the day the trauma team told me that the next step was for Jeremy to have a permanent trach and feeding tube.

The neurosurgeon rotation brought us a new neurosurgeon that morning, the one that Tyler and Jeremy's girlfriend had met with in ER.  Unlike the prior neurosurgeon who wanted to give Jeremy more time, this neurosurgeon said time was up.

"His injury is non-survivable.  He cannot live without a trach and permanent feeding tube, unfortunately he also would not live through the surgery to place a trach and permanent feeding tube.   He can't be flat on his back for the amount of time I'd need to do those two procedures.  The pressure would cause  the two bleeders in his head to start bleeding again and he would likely bleed out.  Even if I could insert the trach, he is breeding a pool of nasty bacteria in his head as we speak.  When he came into ER we stopped the bleeding and stapled the wound shut, God only knows what kind of dirt and bacteria are in there, and don't forget there's a bullet and bone fragments in there as well.

I would expect him to develop Meningitis during the next week or so and if he escaped that he could get pneumonia or an infection from his catheter or he could have a blood clot and stroke.  Over the course of the next two weeks to two months he would die of SOMETHING and he would suffer through all kinds of medical interventions in the meantime.

I think you need to talk to our hospice team.  I'm sorry."

I told him that Jeremy's girlfriend was resistant to giving up, that Jeremy's responses were giving her false hope.

"It is amazing what he's doing considering the brain injury he has and IF we could keep him alive he could be one of those people who retains more function than he should, it would be cruel to try to get him to the other side to see what's possible because we can't get him past step one, a trach. A bullet, like Jeremy's that does not exit the brain, causes an energy wave that has to exit the brain somewhere and essentially blows a hole in your head.  I had a patient a few months ago, a young guy like Jeremy with almost the exact same injury, the only difference is that his percussion wound was smaller than Jeremy's.  When we sent him up to his room from the ER he began talking.  He wasn't making any sense, but he was talking.  Imagine what that was like for that family, because he also had a fatal injury but was talking.  He died the next day."

The doctor explained to me that the path the bullet took and the fact that it did not exit were negative factors.  "It would be hard to do more damage than Jeremy did."

It's important to note here that the prior year, on Thanksgiving Day, my boys had a discussion about having a severe injury and being kept alive on machines.  Jeremy was emphatic that he would be so pissed if he woke up and we had let that happen to him.  

So we all knew what he would want, and I think Tyler said it best.  "He was so intelligent and such an intellectual, that for him to be even mildly diminished would be too much for him.  I don't think he'd want to deal with the paralysis, but he would hate not being able to think normally and express himself well."

And so, we took him to hospice that afternoon to begin what would become a nine day vigil.