"I should not talk so much about myself if there were any body else whom I knew as well."
-Henry David Thoreau

Tuesday, December 31, 2013

Tuesday 12/31 1:17pm

I apologize for not updating sooner, but my attention is otherwise, as you may well imagine.  Last night was long and without sleep for me and Drew.  We had to give Alex pain medicine every four hours to keep her comfortable.  The hospice nurse and social worker came this morning at 9am.  They sat down with us, we answered the appropriate questions and got a few answers ourselves.  She was admitted into the hospice program and the nurse and social worker left.  They were just the admitting staff, so the nurse that is technically assigned to Alex is due to come tomorrow.  Still the nurse this morning was nice, told us that we could continue all of Alex’s medications and we are supposed to have more pain medication delivered this afternoon.  Here’s hoping they aren’t late with that, because the small amount that the pediatrician prescribed is gone and she will likely need another dose around 4pm. 

In case you didn’t know, here is how hospice works… there isn’t anyone in our home.  There is a nurse, social worker and nurse’s aide on call to us and, if we were expecting for this to be a more lengthy situation, then they would come multiple times a week.  The hospice number is available to us around the clock so that we can reach help whenever we may need it.  Otherwise, Drew & I are here with Alex and running the show, so to speak. 

Now, for how Alex is doing.  Not well.  The nurse confirmed what Drew & I already knew, which is that her breathing has long periods of apnea (no breathing), she has the rattle sound when she breathes now and that these things are indications of the final stage of dying.  As I’ve said before, only God has a timeline, but it was suggested that we quite likely have only hours left with Alex.  Since the nurses left, Alex has continued to struggle to breathe, taking long (20-40 second) gaps between breaths.  The breaths that she is taking are quite shallow and very labored.  Her color is changing and we have had a couple of instances when she couldn’t breathe at all and we were sure that the end was very near.  In true Alex style, she’s super tough and not willing to give up just yet.  Her comfort remains priority and Drew & I are just trying to be patient as we hold our daughter and wait for God’s perfect timing. 

16 comments:

Anonymous said...

Love & prayers.

Sallie Plass said...

I love you all! It sounds like Alex is "roaring" in her own way.

Anonymous said...

My heart hurts for you and for your family! May God bless you all at this difficult time.

Anonymous said...

You don't know me, but a friend shared your blog with me and I have prayed for you, Drew, Alex and Emma ever since. Please know that people you have never even met are praying for your precious daughter. May God be with you.

Anonymous said...

sending thoughts and prayers your way!!

Anonymous said...

Prayers arising for all three of you...God bless and keep you.

Anonymous said...

I did this for seven days. I remember the rattle which has a horrible name. My dad went peacefully after 7 days of seeing hi s life slowly slip away and us not being able to do anything to bring him back. My heart is heavy for you all. My thoughts and prayers.

Anonymous said...

Birth and death are very similar,. Even as a Mother forgets her pain in the joy she experiences upon seeing her child, even so will Alex forget all her suffering when she sees the face of her precious Savior. I pray for an easy passing, and for your peace and rest as you wait to see her again.

Anonymous said...

My heart is so heavy for your family. We are praying for all of you. I am sure little Emma is anxiously waiting at the gates for her sister. They will be laughing and dancing together in Heaven.

Anonymous said...

My heart is heavy with sadness for you all. I have included your family in my prayers since I started reading your blog over a year ago. May your family's story inspire many and let a cure for this terrible disease be found ASAP!

Kimberly Crumby said...

My heart aches...we experienced the waiting for a breath to come and the horrible rattling with our 4 year old daughter. My heart hurts for you. Praying that God will wrap you up so tightly in his arms that you know it can only be him.

Carla Smith from Elm Springs UMC said...

Our prayers and thoughts are with you all. As i sit here reading your blog I can't help but thinking and missing my grandson that went to be with Jesus in october and to see all the children that are sitting at his side under the care of our lord. I think that is such a great place to be sort of like they are away at church camp with Jesus as their mentor,couldn't be a better place for them to be if they can't be at home with us as to be in his care until that day that we are to be there to pick them up. Love and Hugs to Alex and to you and Drew. Praying for peace and comfort to you all. Ira and Carla Smith.

Ethan stone said...

We are praying for you all during this difficult time. Thank you for the updates. May God continue to comfort you.

Anonymous said...

Your family is in our hearts we pray for you daily may the good lord give you strength and comfort in this difficult times

Anonymous said...

As with many others, you don't know me, but a friend shared your story with me several years ago and I have been praying for you and your family. I know, no words can heal the hurt you are experiencing, but know that God is with you and even on your darkest days he is carrying you. I am praying that God will give you comfort and peace through this time and when the day comes you will be able to use your story to help others. May God wrap his loving arms around you and hold you tight. Praying!!!

fourkids said...

Praying praying praying.