our weekend update

10:30 p.m. SUNDAY NIGHT

So, there is a lot to report from the weekend.  I'm sensitive to your busy life and am so grateful you come here with free moments you have.  For most posts, I try to summarize the details and expound on the thoughts behind them.  HOWEVER....I don't think that's gonna work this time.  I've waited two days to try to let the stuccato details fade into a flow, but the additional time has done nothing but make the details seem all the more potent.  In a few months, I'll look back and wonder why the blow-by-blow....but for now, I'll just thank you for your expansiveness.

So, here goes...(all you bottom-line thinkers, brace yourselves!) 

Thursday night about midnight we get a call that dad is hemorrhaging from his catheter tube that he, in his ongoing confused state, pulled out.  (This is a very common occurence in patients with cognitive issues...pulling out cath tubes and nasal feeding tubes...but this amount of bleeding is almost unheard of.)  Although we are all hesitant to send Dad to the hospital for more medical intervention that ends up creating more questions than giving answers, Mom and I agreed without question that in this situation Dad should be transferred to the hospital immediately to try to get the bleeding stopped.  I rushed to the Veteran Home while mom, who lives a bit further away, left to meet us at the hospital. 

While the Veteran Home worked hard to get the transfer details in place, I stayed bedside with Dad.  Looking back, it's a bit bizzare that I waited gently, asking a subtle question or two and giving lotion rubs and lip balm support to pass the time.  Is this the time to be patient and passive?  Who knows.  At long last the EMTs arrived, and the transition began to appear strained.  They were concerned about his oxygen saturation (which at one point was 78% rather than the preferred 93%) and his dropping blood pressure (which at its worst was 60/20, rather than the norm of 120/80).  At one point the EMT in charge asked me if we were okay with intubation.  This created some anxiety for me, as Cheryl and Darren had worked hard with Mom on Dad's behalf just weeks before during their visit, to help create merciful advance directives.  Intubation was clearly on the list of excessive interventions.  But, I did call Mom to be sure this was still in place, that an unexpected bleed-out situation did not create an exception.  As we hesitated on the phone together, the immediate need seemed to pass and we were on to the ambulance.  I told her I'd call her back if the intubation question came up again.  I hoped it would not.

However, in the ambulance, the issue came up again as I observed the EMT seeming to struggle, again, to stabilize him.  When he asked me a second time about intubation, I called again.  Mom and I struggled together, and after a quick moment of prayer decided that this untimely emergency still was not justification to change Dad's advance directives.

Once in the ER, the Advance Directives Questions seemed to skyrocket out of control:  are we okay with blood transfusions?  laproscoptic surgery to repair tears to the urethra or bladder?  vasopressors to stabilize chronic low blood pressure?  Normally, I love demanding medical situations that require me to dissect the information carefully, integrating information from multiple sources to create a logical set of options for mom and the family to consider.  But tonight, it's all coming at me too quickly to digest.  I start to panic and as the tears begin to spill, the well-meaning, bubbly (and yes, I'd say high strung) ER nurse technician immediately slows her onslaught of questions and offers us someone to talk with, a palliative care somebody, maybe, or perhaps a chaplain?  I hesitate and then admit, it's Tim I need.  So, despite my efforts to handle things without his assistance, I quickly get him out of bed so that Mom and I do not have to negotiate these crazy-tough questions on our own.

Well, to itemize each ER happening would be space-prohibitive.  Perhaps jumping to the outcome would be best.  After 5 hours of investigative effort, the ER determines that, despite the massive blood loss, miraculously Dad's urinary tract was not torn internally.  Nor was it blocked with a blood clot (which they were expecting, as a newly placed catheter did not enable the bladder to empty).  No, there was no explanation for the spontaneous cessation of bleeding.  What they were unable to definitively answer, however, was the reason for his continued low blood pressure, despite a strong pulse.  Lab tests, among other efforts, only assured them that it was not due to blood loss.  They began to strongly suspect SEPSIS (a "horrible way to die", I felt the nurse was gently trying to intimate as she carefully stated this death path is difficult on families, and generally not preferred as it is easily prevented).  Ready to share with others the hunt to understand this "Mystery Man", they made plans to transfer him to the ICU.  At this point, as Tim was observing the details of the numbers on his machines (his blood pressure was very gradually increasing), I was beginning to get a philosophical sense that we have been given the opportunity, in some ways, to decide how Dad dies.  Or, at least how he doesn't die.  How strange!  Is bleeding out from a tube okay?  No, not if we can help it.  Is septic shock okay?  Well, not for a capable, caring ER nurse, but how about for us?  Thank God for my new data plan: it taught me about sepsis and vasopressors.  But, as always, Google had its limits.  It could not paint for me a visual picture of my pressing questions, "What does it LOOK like to die of sepsis?"

*       *        *        *         *

3:28 am MONDAY MORNING

Tim and I just got back from an unexpected call and now I must go to bed.  So, my summarizing skills must kick in after all.  All you bottom-line thinkers, here's your reward for hanging in there with me:

The results of the ICU trip are as follows....

Dad made it through the night.  He didn't die of sepsis.  Further, our quest to remove the risk of death by tragedy (that is, to remove dad's tubes which he would likely continue to pull out) was unbelievably successful.  Instead of having to decide whether we would remove tubes that would quickly lead to Dad's direct demise, we learned that he actually has improved enough to no longer need them! Specifically, 

• 
  
  He doesn't need a catheter anymore.  (His system is now enabling him to void spontaneously.)
• 
  
  He doesn't need his i.v. anymore.  (He got enough high powered antibiotics in the ER to last anyone's lifetime.) 
• 
  
  He can swallow.  So even though we're keeping his feeding tube in place for medication management, it's not needed right now for nutrition. 

The time in the ICU gave us time to learn these new facts about Dad.  And we likely would not have learned any of these facts if the emergency had not occurred.  Pretty wild, huh. 

And while we were in the ICU, we also got to contemplate the fact that now, despite Dad's continued stamina against all odds, he is now an appropriate candidate for Hospice.  (Tubes are a no-go in Hospice; they're a dead giveaway that family is choosing the "treatment", not "comfort", route.) 

Pick a word to describe Hospice as an alternative to endless medical interventions that are no longer effective:  DELIGHTFUL.  Helping to place your Dad there?  ---- ??? ----  Still working on that one.

So, thanks to the kind and conscientious ICU doctor who answered our questions in a most unexpectedly poetic, insightful and hospitable manner, as well as our unbelievably gentle facilitator (literally the best listener I've ever met, our palliative care nurse who's been following us since Dad's seizure on July 16th), he's been at this amazing 10-bed, just-like-home inpatient Hospice facility since Friday night.  It really has been delightful to visit him in a place where we're all working together toward the same objective: peace.  And comfort for Dad.  And us.

But as I'm creating this post, we get a call that Dad is unexpectedly bleeding profusely again.  And do we want Dad to leave Hospice and go to the ER to try to stop the bleeding?  Or let him stay?  And if he goes, they say, who knows what we'll face (actually, we know).  And if he stays, tonight will likely be his final night. 

Mom, Tim and I confer together and it seems like we're learning what Dad now needs.  More peace.  So we begin to learn about the signs of pending death.  Skin color changes and breathing changes.  We look for both but neither happen.  Turns out Dad's life-death-life cycle continues, and he likely won't die tonight. 

So Mom is sleeping in his room, and Tim and I are going to bed.  We'll relieve Mom in about 6 hours. 

Oh, and I'm also going to start learning about GRIEF.  Even though I'm a therapist, I don't actually know much about it.

So....please keep Dad in your prayers today.  And feel free to START THE COMMENTS FLOWING (below)....I'd love to know what you know about grief. 

xox to all!  Thanks for the love.

k.