Thursday, October 29, 2015

Follow Up On Case

When I wrote yesterday's blog, I did not find out as much info beforehand as I should have.  The little girl has Charcot Marie Tooth Disease according to other news sources.  As I read more about this situation, I became even more disturbed.  While every single case of any disease is different, for example Sam and Sarah both have Peter's Anomaly,  Sam seems to be more affected by the small statue &heart mummer, while Sarah has more structural abnormality's in her eyes.  Both have the mental delays and some muscular  issues.  Anyhow in everything I read about CMT, there was little talk about life expectancy being abnormal- in other words this is NOT a fatal disease.  There were a few references to the fact sometimes there is decreased lung capacity. 

Having been in the "special needs world for almost 12 years, I can read between the lines.  My take on this is the family has decided not to have a trach done on the child.  A trach would alleviate the pain of the suctioning down her nose.   After a trach is done, there is no pain associated with it.  It's very easy to suction, even deep suction the lungs. 

I tell you what happens ......  when a child needs a trach, the parents are told that they can have it done, but they are told they do NOT have to have this done.  We were told that with Selah and I've had several other parents tell me the same thing happened to them.  The doctors will say without one, evidently your child will have an issue that can not be resolved and will pass away.  Honestly to me, I felt like the doctors were giving us "a way out" and it made me MAD!   Once a trach is in place, there is a medicine called  tobramycin that can be inhaled through the trach that will fight lung infections.  Selah has been on it for years.  It's a miracle drug. 

I don't mean to come across as unfeeling or unkind but I believe in LIFE-   I refuse to embrace the culture of death that is in our world today.  I refuse to embrace not fighting for a child's life, I refuse to embrace euthanasia, I refuse to embrace doctor supported suicide, I refuse to embrace abortion or the killing of newborns who are not "perfect"  I believe in supporting the elderly and not hastening their deaths......

There is a time to let go, when doctors say there is absolutely no hope, but even in that, one must be very careful not to hasten death.  I'm not against a DNR (do not resuscitate) but I am against letting a person get to that point unless there is no hope.  I just do not believe this is the case. 

So you might say I don't  know this child's whole medical history and I do not.  But knowing what I know, I'd guess there are things that could be done for her that could lengthen her life and even make it less painful. 

This whole situation bothers me very much.

I've had four times where I've had to make end of life decisions and it has never been easy.

 The first time I was only about 25 and my great aunt was put on a respirator and had several medical things happen at once.  I was greatly troubled that as next of kin, I was asked to make the decision to turn off the machine.  Jon and I called some ministers we knew and discussed it with them but I was just sick.  We were at the hospital with her, waiting for the doctor to come.  I was still undecided and walked out of the room ( a friend had stopped by) within 5 minutes, the nurse was running for me, her heart stopped just that quick.  I was grateful not to have to make the decision to take her off life support. 

The Sam, several times we had to make decisions about him and we always were conservative and fought to save him.

In 2012, right after adopting the girls, my birth brother fell into a coma and I was called in.  I had not seen him but once as an adult & maybe three times as a child.  He had recently moved to our area and we had planned to get together, he had cancer.  Then he had a massive heart attack.  When I was called in along with my birth mother, it was extremely uncomfortable.  She had not seen him in over 20 years.  He had a long time girl friend but the doctor was not including her in the discussion.  I felt it should be her call as they had been together for decades and refused to sign anything without her involved.  Eventually the decision was made to remove him from life support.  He lived a few days before passing away. 

Then of course, only a month later, we would be making the same type of decisions for Selah.  We always wanted to fight for her, to give her the best chance ever.  Believe me we were offered " a way out" several times.  At one point a doctor counseled me about how horrible our life and our other four children's lives were going to be if let her live, and if we took her home to care for her.  As you can imagine, I sent that doctor PACKING and refused to allow her back on Selah's case.  That was the last thing I needed to hear.  Of course I was scared out of my mind but I knew what the right thing to do was.....  SO I KNOW what doctors say and I know the kind of things that are done, so it makes me a bit suspicious.  We've had some of the same things said to us about Sam but not to the level it was with Selah. 

All I can say is that little girl and her family need prayer. 

But YOU need to think deeply before you make decisions of life and death for someone else and for yourself.  It's a very serious thing.  Make your decisions for LIFE before you are confronted with a situation.  In this world of medical marvels, chances are you will be confronted at some point with medical decisions that are very serious.  The only time I wasn't sure of the right thing to do was with my aunt.  But now I could make the decision to take her off the life support as there was so many things going on with her and her age (over 80)   With my children, I knew to fight for them.  With my brother, he did have terminal cancer and there was little to no brain activity.  However that decision was made by his long time girl friend and agreed on by everyone else.  BTW, she is such a wonderful person, I wish I'd gotten to know her sooner.  She has become a friend. 

Taking someone off life support, is one thing.  Not acting before that person gets to that point is quite another thing!

These decisions are hard, no doubt but LIFE needs to be protected!


Well changing the subject, we are enjoying Fall in Florida.  I took the kids outside for about 2 hours today and they are some tired kiddos tonight.  Sarah has had some issues staying asleep lately but hopefully she won't tonight.  Since she lost all her sight last spring, she's had some issues. That's not unusual many completely blind people have an issue with sleep.   She tends to get out of bed and lay on her rug.  Between Jon and me, one of us will wake up and go check on her and put her back in bed.  Last night I laid out a bean bag chair a blanket and a huge pillow on the floor.  Of course she didn't get out of bed all night LOL! 

Sam is finally using the little slide and both of them can sit in a regular swing seat.  Sarah swings herself pretty good, Sam is lazier.  But they love being outside.  It makes for much happier kids.

In the summertime in Florida it's hard for my little ones to be outside, it's too hot, too many bugs (they don't know how to knock them off), lots of rain we enjoy our Fall/Winter/Spring outside.  Otherwise we are on the screened front porch with ceiling fans on!  They love that but don't get much direct sun or exercise.   Selah has been going outside too again.  She really hadn't been out much since we moved.  Her nurse noticed a plane and she remarked to Selah "look at the plane" and she looked up!  It seemed to amaze her nurse today:)  

My sweet father in law is still hanging in there.  My husband and his brothers have had to make some medical decisions in his care and I'm so proud that they have all made the decisions that have enabled him to live in comfort. They respect his LIFE.  My oldest brother in law has spent the last 20 years really being there for my father in law, he moved PaPa in with his family after my mother in law passed.  My brother in law and his wife have been an example of a son who did everything for his dad.  Of course Jon and his younger brother were involved too but not on that day to day basis like they have been.  We as a family respect life, even when life may not be easy or comfortable.  God gives the grace.  My younger brother in law and his wife have done a lot of care for her parents.  I'm glad all our kids have seen the various examples set by each family member.  That gives them a legacy that is not too common this day and age. 

Hope you all have a great weekend!  I always feel like Thursday night is our Friday.  Jon usually works late but he's off on Friday and Saturday.  Steve is coming home this weekend:)  It will be short but it's always good to see him.


  1. I am all for life but to what extent. Are you keeping the child alive for selfish reasons or cause the child is happy and healthy? I have seen people choose death when life is too painful and not worth living. I fully support both ways.

  2. This is a very tricky subject and there is no black and white. In this child's case I think the parents should go with the trach but as a nurse I can tell you that saving a life at any costs can be wrong and is often done out of selfishness. Yes, medical science can keep many people alive but at what cost and for what kind of life? Each situation is different of course but as a nurse I can keep people alive with machine's breathing for them and making their heart beat, but are they really alive? Is it for the person suffering or for the family that doesn't want to let go? Our culture hasn't changed much really. People used to die from many of the ailments we can treat now. Death used to be considered a normal part of life. Now we fight it at every turn, which is not bad thing, but we must be very careful that the decisions we make are for the best interest of the person who is ill, not for us. I see death often.:( I know that sometimes the choice of a dignified death without medical interference and extreme life saving procedures is the right path.

  3. Why do you involve yourself in other families business? Really why do you involve yourself in private businesses of a family? Dord you not already have enough on your own plate?? I just don't get it....all you have to tell us is to pray n quickly describe situation.

  4. Because they have chosen to make their situation PUBLIC in order to sway public opinion by emotion.