Monday, October 27, 2014

Lucky Number "6"

Port #6 has arrived and is 10 days old! 
Friday my husband accessed it for the first time and he said it was impossible to miss.  What a relief!
We have had so many problems with "Christian's" port and the fact that he struggles with a horrible fear of needles does not make infusing easy.  Having a new, higher profiled port was the only answer and I am so relieved that it is healing beautifully.  I am looking forward to accessing the port within the next few days.  It has been at least two years since I have been comfortable accessing my son.  It has been hit and miss but having lost a great amount of "control" over my son's care has been difficult.

It amazes me that ten days ago my son had surgery. He spent the weekend playing in his new "Ninja" costume and tonight enjoyed a leisurely bath without his port accessed…completely free of a needle :)  I don't think I would bounce back as quickly…most adults don't. 

Surgery is serious stuff.  It's never "routine".  When you send someone you love off to surgery and they are loopy from the medicine or already sleeping, the seriousness sometimes does not set it quickly.  Last week my son cried as he was wheeled away from me and his Dad.  That's never happened and it left me doubting the choices we had made. 

Often times those of us affected by chronic illness seem to shrug off the seriousness of a situation.  Maybe it's a defensive mechanism…or just plain fear.  It's almost as if we become "numb" but not because we don't care, it's because we care so much that it physically hurts. 

We move forward trying to make the best decisions we can with what we have…that is all we can do.  Don't doubt yourself.

Sunday, October 12, 2014

Sunday Morning

Most Sunday mornings you will find me in church…but not today.  My husband and I were not able to access "Christian's" port on Saturday evening and when we spoke to the doctor on call, we decided to skip his dose of FEIBA.  He was not bleeding and not in a critical situation so I planned on taking him to the emergency room the next morning to get an IV started.  His port was aggravated and with his history of difficult access with #5, we thought it best to give it a break.

In my fairytale mind I was thinking we would walk in, get a line started and make it back in time for Sunday School, or at least the second service.  (It's never been that easy before, but there is always a first time….right? I was just trying to be positive.)

Two attempts were unsuccessful and the third attempt was made by the "Ultrasound Squad".   You know, the ones who come in with the ultrasound machine to find the veins that are deep.  They use the ultrasound machines for people with difficult veins, elderly folks whose veins are very fragile and kids like Christian who are just hard sticks.

Fortunately they were successful and my son has an IV for the next few days until we can meet with the surgeon to figure out what can be done to get #5 in the right place.  I am hoping it is a matter of going in to suture the port more securely….or something like that.

When my Christian is in the hospital setting and a needle comes his way, his PTSD is raging.  He can get to the point of being still but his fear sends him out of his mind and he screams and cries unlike anything I've ever heard. 

Sometimes I am in the room, other times I am right outside the door and most times you won't see a tear on my face.  I walk away from these times wondering how in the world I can be devoid of feeling?

Truth is, my feelings are there.  I am devastated, sad, angry…every emotion in existence is flowing through my being but my son needs his factor and the only way to administer it is through a vein.

If you are watching a parent endure something awful with their child and you don't "see" what you expect, keep in mind that you never know what is going on inside.

That parent may not be shedding a tear because they are screaming prayers in their heart and mind to the One they believe can bring peace.

Perhaps that parent has been up for hours on end and is so exhausted that they can hardly stand up.

Maybe that parent is worried about their other children or loved ones at home while they are on "hospital duty" and are on their last day of paid leave from work…or are looking forward to getting back to work to "rest".

What they have been through is probably more than you will ever experience in your lifetime.

On this Sunday evening I am sending out my good thoughts, energies, and prayers to those families in the hospital with their children.  They sit and watch as they are not able to take away the pain and do what they can…love.

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