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.

In a matter of minutes....

This morning I went on the early school run and took "Lance" to school.  When I returned, my husband was sitting on the stairs, a pool of blood drops at his feet and Christian was in tears.  He tripped going up the stairs.  Yes, going up the stairs.

If the gash had been any larger, I think we would have been off to the hospital.

Things have been going so well for such a long time for my Christian and the minute I get complacent...something happens.

Just a little reminder that hemophilia is always with us...stumped toes and all.  It's amazing what can happen in just a few minutes.

Cellcept here we come!

"Christian" is starting Cellcept tomorrow.  He was on it for a brief time with no problems, but the issue was that the doctor who started him on the treatment left the HTC and we never were able to see the result of a full run of the medication.

We are hoping that this helps his inhibitor come down.  It's currently at 28.  It sure would be nice to start Immune Tolerance. 

When I started to think about all that my Christian has gone through with his inhibitor, it's kind of overwhelming.  He was diagnosed at 11 months and he is now 6 1/2 years old.  The disheartening part is that I have heard of people living with an active inhibitor for years upon years.  You just never know how long it will take to tolerize (or even get to the point where you can try to tolerize).

I am just so grateful that things have been calm for these past couple of months.  It's been quite a respite for the entire family.

More about Cellcept to come.