Patience...

The past few days have been full of ups and downs.  We had to stop the wean of the strong medication that Carter is on.  The withdrawals, and the fact that Carter is not suppose, to move were just too much for his little body right now.  We have actually had to increase the strong medication twice and give him a bolus of it.  He seems to be much more comfortable now, but still not completely asleep.  The medication is called Dexmedetomidine.  It is a new and very expensive experimental drug.  They are not sure of long term and short term side effects, and it is not ideal for Carter to have to stay on it for an extended period of time. The next step would be to put Carter back on the ventilator and give him sedation medications that way.  This is not ideal because after Carter's first surgery he aspirated, and it caused aspiration pneumonia.  He has still not had a clear chest x-ray because he has to stay still and flat on his back.  He cannot move to help clear up the pneumonia.  If we put him on a ventilator this could cause the pneumonia to get worse and could lead to a lot of trouble.  We know the Dexmedetomidine is not ideal, but it is our best option right now.  Carter is on a TON of other medications, but they do not seem to really help anymore.  He has started to build a tolerance to most of them.  Our main concern is that Carter still has at least another month of having to be in traction and flat on his back.  If we decrease the Dexmedetomidine and continue to give him the other medications to try to help keep him sedated and comfortable, he will continue to build a tolerance to them.  Once it is time to completely come off of the Dexmedetomidine, he will not have any medications that are effective to help him.  So, the goal right now is to keep the Dexmedetomidine going at a rate that keeps him comfortable and sedated.  Hopefully we will not have to use as many other medications.  We will then have them available when it is time to wean the Dexmedetomidine again.  That is the plan right now.  It is likely to change in a few hours.

We are praying at this point that Carter can get comfortable and to stay still.   The main issue is his age and how strong he is.  Trying to explain to a 2 year old active little boy that he has to stay completely still is pointless.  Every time he wakes up he points at the door and says "up."  He is over laying in the bed and he is ready to go!  He is strong enough to kick anything we put on his legs off, and he can actually pick up the weights on his traction.  He finds it funny to pick up the weights and make them knock against the bed.  Can you tell the medications that are suppose to keep him in a coma state are not working?!  His entire life we have pushed so hard for him to walk and go, but now he just can not understand why he can not get up and go.

The biggest thing Brandon and I are struggling with is patience.  It is so hard to watch Carter go through all of this.  His little life has dramatically changed.  He went from being up playing, running and jumping to being completely bed bound and unable to move.  We have been down so many long roads with Carter and we have always found a bright light at the end.  We know we will find that light again, but it is hard to see at times.  We have gotten through the past month by your sweet prayers, messages and love for our family.  I read each and every message and we are honestly grateful.  God is always with us and we know we will get through this just as we have everything else.  As always…To Him be the Glory!!!

I waited patiently for the Lord; he turned to me and heard my cry. Psalm 40:1

One of our sweet nurses knew that we have not had a home cooked meal in a long time.  She went out of her way and cooked us a meal!!! It was SO sweet of her and it was very YUMMY!!!

I work part time and I always get asked how in the world I continue to work and take care of Carter? Well here are a few pictures of my co-workers.  They are so supportive and love Carter.  They are the reason I am able to continue to work and take care of Carter.  We love The Newborn Center at The University of Mississippi Medical Center!  Thank you all SO much!!! No matter what hospital Carter receives treatment at Blair E. Batson will always be our home!!!