Everyone is Different

Several people in the bleeding disorder community don't understand why some people are hospitalized so often for bleeds.  "Why can't you treat the bleed at home?  Why do you go to the hospital so often?"  Honestly, those kind of comments make me doubt my instincts.  They upset me a bit.

Often times my "Christian", who is a frequent guest on the 6th floor at UNM Children's Hospital, has to be admitted for bleeds.  It's not just the bleed that is being treated, but the pain.  We cannot control the pain at home and the only way to give him relief is by IV Morphine that can be administered at the hospital. 

There is nothing worse than hearing your child scream in pain and not being able to help him.

If you were to look at him lying in bed playing the iPad, you would never know he was hurt.  But when you pull the covers down and look at his knee and you realize he has not moved positions on the bed for hours on end, you begin to understand.

People don't understand what our children go through.  They assume that if you can't "see" the condition, it really can't be all that bad.  A cancer patient who has lost their hair is a visual testimony to what they are battling.  The same for a person with a missing limb or someone with an oxygen tank by their side.

Truth is, I can't imagine what my son feels when he has a bleed.  It's a pain that takes him to a different place. Sometimes I think he is out of his mind for a brief few moments, and it is heartbreaking.

If it means coming to the hospital to treat bleeds and pain, then that's what we will do.

Everyone with a bleeding disorder is unique in how their bleeding disorder "shows up".  As a community, we need to remember that we are all different and sometimes what works for one person does not work for the other.  Let's continue to be passionate about the care we give and receive for our loves ones...and be passionate by reaching out and offering a lifeline of support to each other.

The Saga Continues

"Christian's" knee bleed is continuing to heal and his ankle starts to swell on Sunday afternoon.  He has been off his feet in a wheelchair and he has an ankle bleed.  Spontaneous bleeds seem to be our thing.

Dealing with a bleed is difficult, but when you have two going on simultaneously, it's a little scary.  When his right ankle bleeds we get extremely concerned.  This is a target joint and it often causes such great pain that he has to be hospitalized.

We infused 6 mgs of NovoSeven and called the HTC.  Our hematologist directed us to infuse 6 mgs. Every 4 hours until the morning...Yikes!  We'd never done that before and I was a little nervous.  After a few phone calls I felt a little more reassured that the dosing would be okay.

Christian slept through the night.  I could not believe it!  I was about to pack a bag and have it ready for when he started to scream in the middle of the night because I was so sure his pain would get unbearable, but the big doses of NovoSeven have helped to get this bleed under control.

We are now at 3 mgs every 4 hours.  His ankle is not burning hot and the swelling has gone down.

This is not a perfect situation, but boy am I grateful that we are still home, he is not in pain and we have what we need to treat.

I would say that I look forward to a "normal" week, but what does that really look like?

Back too Soon?

On Wednesday, January 30th, "Christian" woke up with swollen knee.  We went to get it checked out at the HTC and he was admitted to the hospital.  We were able to go home on Sunday, February 3rd with the understanding that we continued to keep him resting, with ice, compression and factor.  We sent him back to school on the 6th, in his wheelchair and on the evening of Friday, the 8th, his knee started to swell again.

I immediately thought "We should have kept him home a few more days."  I know, I know, I can't start looking back and doubting my decisions...but I always do.

All I want is for my son to live as normal a life as possible.  And this inhibitor almost seems to make it impossible sometimes.

The reality is overwhelming...this inhibitor may be here for many more years.  And if that is the case, it is my job as Christian's mom to keep his life moving forward despite his bleeding disorder.  One thing is for sure...our lives are never dull.