Wednesday morning update


Mom is still with us and resting comfortably.  She was removed from life support nine days ago.  What a strong fighter she is!


We fired her doctor on Wednesday after he did a few things wrong.  He lowered her morphine and said we agreed to it, which we never did.  Even the nurse was puzzled as Mom was in distress.  We immediately brought it back up to the same level and Mom was comfortable again.  Additionally, the doctor said that he was getting pressure from “administration” to release the bed and pressured us to move to a hospice setting.  He said there was a hospice bed available across the street.  The administration told us that was not true at all.  They never talked to him about that, and they said we were welcomed to stay through the end.  Additionally, the bed across the street is a nursing home, not a hospice bed.  We just simply can’t trust him any longer, and relieved him of his duty.  We now have a new attending physician.


Mom’s brother, Billy, has been driving up from Florida for the past few days.  He is the only one of Mom’s siblings who haven’t seen her yet.  He will be here within the hour.

Comfort Care

 

Mom is currently in the hospital in “comfort care”.

 

I apologize for the length of this post.  We intentionally have not posted in a while, and lot has happened in the past week.

 

Visit 1 – September 17 – Hip Surgery

 

As described in previous posts, Mom had right hip replacement surgery.  She was rehabbing at home and was doing well.

 

Visit 2 – October 12 – Emergency Room Trip #1 (ER1)

 

As described in previous posts, on Saturday October 12, Mom had a pain in her left side.  Dad brought her to the ER and she was admitted to the Progressive Care Unit (PCU).  Tests revealed a blot clot in her left leg, probably caused after the surgery.  The clot traveled to her lungs and was immediately treated by the a pulmonary.  Blood thinners were used to treat the clots, and that caused internal bleeding around the area of her hip surgery’s incision.  She was taken off the blood thinners and required two units of blood.  She rebounded and was discharged on Wednesday 10/16 on blood thinners and oxygen on an outpatient basis.

 

Mom had a really great, strong Thursday.  Alice flew up from Florida and Paul took the train back to Boston.

 

Visit 3 – October 18 – Emergency Room Trip #2 (ER2)

 

When Mom woke up on Friday October 18th, she walked herself to the bathroom, and when she came out she was sweating and had trouble breathing.  During ER1 discharge, they said if you have difficulty breathing, call 911 to come back.  So Dad and Alice called 911 while Mom sat at the kitchen counter.  The EMT’s came in minutes and Mom got up and sat herself on the wheelchair.  When outside, she got up and got herself into the stretcher.

 

She was ok until they got inside the hospital’s ER.  While in the ER, she suffered a Pulseless Electrical Activity, or PEA, which is a type of cardiac arrest, where a heart rhythm on the electrocardiogram shows that the heart should be producing a pulse, but is not.   They performed CPR for 7 minutes and revived her.  She went into cardiac arrest a second time, and they performed CPR for 8 minutes, and again revived her.  Defibrillation can not be used to correct a PEA.  Alice, Dad and Carolyn were asked to go to the “Quiet Room”.

 

Mom had CT Scan and was moved to the Surgical ICU and put on a ventilator, four types of blood thinners and sedatives.  She was unconscious and in extremely critical condition.  We were told by the doctors and nurses not to leave the hospital that night.  I drove down at arrived at 10pm.  Dad, Carolyn, Alice and Jerry were there all day.  We slept in the waiting room.

 

Mom was under constant supervision of the SICU nurses.  There were many tests performed over Saturday and Sunday and Monday.

 

On Monday, October 21, we met with the ICU doctor, resident and nurse.  The multiple neurological tests concluded that the top half of Mom’s brain did not get enough oxygen during the time that her heart was stopped.  The doctor said there was so much damage that Mom would never wake again, be cognizant, be able to converse, laugh, make decisions, or make purposeful movements.  The lower half of the brain, which controls reflexes, breathing, heart signals, etc was functioning, so she was not technically brain dead, but what makes a person the person they are was permanently and irreversibly damaged.  Her kidneys were also shutting down.  Mom had advance directives on what she would want if this situation ever happened, and she would not want to live on permanent life support like that.  We made a painful, but right, family decision to remove Mom from life support, which is what she wanted us to do.  The ventilator was removed and Mom was put onto “comfort care” at 3pm on Monday 10/21.

 

We offered to donate any organs that might be harvested for another person’s benefit.  The Gift of Life department was contacted.  After reviewing her case they said that they wouldn’t be able to use her organs as they had been damaged too much, but they may possibly be able to use some skin tissue.  Note: please consider signing up as an organ donor.

 

Mom was moved from the ICU to the Progressive Care Unit (PCU) at 6am on Tuesday.  There’s no way to predict how long someone will last after being removed from life support systems.  The main goal of “comfort care” is to make Mom comfortable, pain free and peaceful.

 

Tuesday, October 22, was Mom’s 76th Birthday.  Jerry drove to her favorite bakery, Stocks, and bought a birthday cake.  What a touching and wonderful thing to do.  Later that night, Dad and us four kids, all stood around Mom and sang a rather pathetic, but unforgettable rendition of Happy Birthday.  We were laughing and crying at the same time and we’re sure Mom was laughing with us.  We all felt the weight and intensity of the moment lifted afterwards.

 

It’s now been 6 days that Mom’s been on comfort care.  Dad and her four kids have been here every day.  Two of us stay each night as well.  Mom’s siblings in the area have stopped to say their goodbyes.

 

Thank you to everyone who’s given Dad and us support in the past few weeks.  We really appreciate your thoughts and prayers.  We especially want to thank the absolutely tremendous nurses here at the hospital.  They are just great.  What a noble profession nursing is!  One nurse in the ICU, Melissa, said something after we thanked her for her help that was so comforting and really summed up what nursing is all about – “It is such a privilege to be part of a birth or a death.  Thank you for letting me be part of it.”  Wow.

 

It’s been an intense week.  We didn’t expect Mom to still be with us this many days later, but she’s a real fighter and she’s going on her own terms (which if you know Mom, is kind of her way.)  Mom’s resting comfortably now, but we don’t expect her to be with us much longer.  We will post more soon.   Thank you for keeping Mom in your prayers.

Happy76Birthday

Back to the hospital

Mom did great yesterday.  She got a good night’s sleep the night before.  Was up and around the house, on the computer, watching the Red Sox game last night.  She sounded very good.  I came back to Boston yesterday and Alice is up now, staying with my parents at their house.

This morning, when Mom woke up she was having difficulty breathing, so Alice and Dad called 911 a few minutes ago to have the EMT’s take her back to the hospital.  EMTs are there now and just read her blood oxygen levels at 84, where normal is above 90.  

Home

Mom is home and sleeping in her own bed. We have an oxygen machine in the dining room with a 50 ft tube that can reach throughout the house. We also have 5 cylinders of oxygen for portable use when out of the house. I picked up a Pulse Oximeter at CVS, which measures oxygen level and pulse. It’s a matchbox size device that you put on your finger and it measures in about 10 seconds. Neat little device. 

Dad’s exhausted too, both physically and mentally. A good night’s sleep will do him wonders.
Mom is sure to enjoy not being woken up at 5am to give her daily morning blood sample. 
I really have to commend Carolyn for her tireless support for my parents during the past few weeks.  She’s been an advocate for my Mom and I’m so proud to call her my sister. 
Alice has agreed to extend her stay here to help my parents with her outpatient treatment and many upcoming doctor visits.  She will take a ton load of stress off Dad’s shoulders and I thank her for tremendously for her sacrifice in being away from her own family. 

Discharge orders being written for today

We thought there was a possibility that Mom would be discharged tomorrow, but the doctor and physical therapy agree that she’s strong enough to get around at home now.  So, he’s writing up the discharge order now and we will be taking her home later today.

The Home Care staff is preparing the resources we’ll need at home, such as oxygen and monitors.  A nurse will come to the house to periodically check Mom’s blood levels.

She’ll be on coumadin blood thinners to help with the clot. 

She’s very relieved to be able to leave the hospital and go home.