Rapid Change

Rapid Change

Stream of consciousness writing about my life since April 4th.  My mother, Abigail M. Potter was taken to the hospital, and immediately determined that she needed to go to UW Madison Hospital.  She had extreme shortness of breath, couldn't even walk three steps without needing to rest. Also presented with swollen lymph node in her left armpit - never a good thing.

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April 4th, life changed.  All of a sudden the concept of a limited bank account of time came into being.  My thoughts scrambled, worried and wondering if I am ready for this part of my life: my parents transition into the last phase of their lives.  Do I have the strength?  Will I ask the right questions?  What's the meaning of unconditional love?  Will I show it?

6am April 5th I drive to Madison.  Dad and Mary already in Madison. They had a poor night's sleep in a hotel just up the road, and so, they needed reserves.  I entered the hospital recalling the last time I was at this hospital. I was with Boppa, mom's dad.  He had cancer and was treated at the same hospital many, many years ago.  So, what will this be like, now that is my parent in the hospital bed?

Mom was in a ward called TLC, (Trauma Life Center).  I had no idea what I was walking into ~ this is the ward they take patients who are literally on life support.  And, to make it worse, mom's room was in the back corner.  I had to walk past every room to get to Mom's.  As I walked by each room every patient I saw was not conscious, wore neck braces to keep their airways open, and had bags wrapped around their legs so blood flows and doesn't clot.  I was afraid to walk into Abby's room.  I had no idea what to expect.  Room 7, I finally see it.  Curtain drawn and just as I get close a nurse walks out.  With my youngest nephew in tow, we both peer around the curtain and there she is, awake, hungry, but happy to see us.  We both entered, scared, together.

She had spent the night being tested, and still waiting for more tests.  Their concern is that her oxygen profusion level was 74.  Normal is 98-100.  Blood Pressure, extremely low and respirations about 35.  Mom's body was starving for oxygen.  They told us she had something called Pulmonary Hypertension. Seems innocent, I thought.  High Blood Pressure?  But what's Pulmonary Hypertension?  I wasn't concerned, after all, Dad has lived many years on hypertension medications, no sweat. 

Well, to really know what was going on with her heart, she had to have something called a "right heart catheterization." She couldn't eat.  She couldn't drink.  Limited to ice.  She hadn't eaten anything since the previous morning, an orange. "What time will we have the procedure?"  "One o'clock."  "Okay, Mom, hang in there."  One O'clock came, Two O'clock, Three O'clock... what is going on?  No answer, but the nurse and her critical care team were very nice.  They were as frustrated as we were.  Mary and Dad are exhausted, Andy is there for the second time in the day.  5pm, Mary and Dad decide to go home and get a decent night's rest, food and a shower for the next day.  Andy and I will stay with Mom until she is done with this procedure.  Finally, 7pm they take her in.

"She will be done in about 15 minutes."  "Okay." I sit, spending useless time scanning through facebook, looking at the news, waiting.  More waiting.  What is happening?  She's been in there for 45 minutes.  Finally, someone who looks like a doctor comes from behind the door.  A nice attending comes to see us.  "How did she do?"  "Your mom asked me to come and let you know she's okay.  She will be done in about 15 minutes and then they will take her back to her room." Okay, so how is she doing, I thought?  Patience Poppy, Patience. 

15 minutes later, the cardio specialist walks through the door.  "Elizabeth and Andy?"  "Yes." "Your mom is all done." "Great, what did you find out?"  The doctor went on to explain that mom's cardiac output is one of the lowest he has seen.  He said the oxygen level when the blood leaves the heart it is about 75, and when it returns, it is about 35.  This is half of what it should be.  Her heart is also working so hard to pump blood, but she is only pumping about 2L to our 5L.  Literally, starving her body for oxygen.  Why? 

I am starting to understand a little about pulmonary hypertension.  Mom's pulmonary arteries have been working so hard to get blood to the lungs, her arteries are narrowing.  That's why she can't pump enough blood anymore.  I kind of get it.  I understand enough to know, it's bad.  Really bad.

The doctor explains mom's numbers are about as low as they can get before the body is just starving of blood and oxygen.  "What can be done for this?" I ask.  The specialist said the doctor will talk with us tomorrow to present options, but he started talking about very few options, and talking about "palliative care."  What?  Isn't that like care for people they can't help?  It was all so much to take in.  As we all do, I moved into action mode, "can she eat now?"  "Yes."  the specialist replied. "Okay, let's get her some food."

Andy, you call Mary, I will call Dad.  They nurses needed a few minutes to get her back to her room and back in bed, with all her monitors and machines. "Dad, mom's tests are done."  "And, what did they say?"  "Well, I am not sure I understand it all, but what I do know is her cardiac output is very low.  The specialist hasn't seen many numbers as low as mom's.  She is only pumping about 40% of the needed blood and her oxygen levels are terribly low in her body.  It is about half of what it should be."  What did he say this all means?"  "Well, dad, it didn't sound good, but the doctor we talked to is a specialist.  He really figures out what is happening in the heart and said Dr. Runo will have options for us tomorrow morning.  He did mention there are not many options, and palliative care may be something to consider." Dad says, "that doesn't sound good."  "I know, I would agree dad.  I am sorry to be the bearer of bad news, and I think we will know more tomorrow, but it sounds very serious."  And then dad taught me an important lesson.  "Well let's see what they say tomorrow and find out what Dr. Runo thinks and go from there.  One day, one decision at a time."  Thanks for the lesson dad. 

Mary was in disbelief.  As hard as it was for her, I had to ask her to go check on Dad.  I didn't want him sitting alone after he just learned his wife of 49 years is lucky to be alive, and that her future is yet to be known.  She collected herself and did just that.

Andy bid mom good night, and I got her food, finally. She was so hungry, she didn't even wait for me to give her the utensils.  Orange juice, French toast, scrambled eggs, peaches.  She ate it all in very short order.  After that we watched the March Madness game and enjoyed quiet together.  For right now, everything was fine.  The simple things in life were taken care of.  She was fed, hydrated, and in very good hands.  She finally slept.  I kissed her good night, told her I loved her, and went to occupy our revolving hotel room. 

Holy shit!  I did not expect all of this.  I went to the hotel, Goggled pulmonary hypertension and began to realize just how serious this thing is.  Google said treatment options are very few, but include the extreme of heart and lung transplant.  What?  I had to turn it off and try to sleep.  My brain and emotions are on overload.  Call Jon and go to sleep.  My mind is trying to digest it all.  Restless.