Stepping Back

"Christian" has been doing well.  His ankle has recovered from the last bleed and he is running around being a typical six year old boy.

This afternoon, while at the harvest festival at church, Christian was playing with one of his friends.  As I sat back and watched, I realized how he has adjusted.  He runs as fast as he can with his brace to keep up doing little boy things, but you can really see how his ankle has endured damaged from repeated bleeds.  He has a funny little hop in his gait.  But it sure doesn't stop him.

It still just breaks my heart.

He doesn't know any different, but one day he will.

The Most Awful Night

Wednesday night was one of the worst nights of my life.  My "Christian" came into the hospital due to an ankle bleed on Tuesday.  We could not control his pain at home.  His ankle bleeds are notoriously painful….just off the charts. 

 

A morphine pump had to be used and he could just get comfortable.  His pain was unbearable.  Long story short, it was too much.  He got into the kind of deep sleep that children going into surgery get into.  He would not wake up.  I kept rubbing his legs and arms and kept wiping his face with a wet cloth.  I was out of my mind!  The room was filled with doctors and nurses working to get him to wake up and they gave him medicine to reverse the morphine.  It was so painful to watch him come off the morphine. 

 

For a moment, which seemed like an eternity, I thought he would not wake up.  What would I do if he did not wake up?  It was the worst feeling of my life.

 

You think you know what hemophilia is all about.  The bleeds, the infusing, talking to the school nurse constantly, having boxes and boxes of supplies...enough to open a small pharmacy...and you get so enveloped into the hemophilia that you don't think that something else could happen.

 

Years ago some friends of ours, with a 2 year old son who had severe hemophilia, died from choking.  Choking.  Their lives were so immersed into the bleeding disorder that nothing else ever crossed their minds and it was devastating.

 

I'm not saying we should worry about living, but when you have a wake up call like I did, it reminds you to not take things for granted.  Build Legos, snuggle and watch a movies, take their hand and follow them to their room to play.

 

We never know when our last day will be, so let's make the most of each and every moment.

Pain

My "Christian" has been in the hospital since Tuesday and in huge amounts of pain. He has been screaming in pain "My ankle, my ankle!" He's now on a pump with continuous morphine flowing and he still cries out in pain. The measurement of his ankle has gone up instead of down and I am extremely concerned. We are waiting on his inhibitor results to come back in and I am at a loss. I don't even know what to think. 4 mgs of Novoseven are being infused every two hours. I was hoping to see things at least stabilize by now.

Fortunately many people do not know what it is like to see their child in extreme physical pain. Even when it happens time after time it's something that does not get easier. You never get used to the painful screams, seeing your child constantly scratching themselves raw from the pain meds, the anxiety that develops when they have topped out at the amount of pain meds they can receive...monitors, oxygen....it's just not convenient when you are a six year old.



 

A Few Steps Back

I truly thought my "Christian" had turned the corner on his fear of needles. 

We've taken a few steps back.

I completely lost it with him last night when he did not cooperate...not one of my better parenting moments, and when our homecare nurse came today it was a huge fight to access.

The good thing is that he is accessed for the week. 

I just don't know what to do.