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.

Ugh!

Don’t you just love when you put your child with a bleeding disorder to bed and you’re thinking how grateful you are for an uneventful day?  Then when he wakes up the next morning and he can’t walk because his knee is blown up.

Yes, this is life with hemophilia and an inhibitor.  You just never know what is going to trigger a bleed.  I love when my healthcare provider asks me “Was he doing anything to cause the bleed?”  95% of the time all I can say is “He is just being “Christian” J

So many times I wish there was a reason for a bleed.  If I had seen my son fall, or bump into something…that would explain it and I would halfway expect something to happen.  One thing is for sure…I listen to my son.  He always knows when a bleed is starting.  Sometimes it takes quite a while for the bleed to become evident and other times the affected area just blows up.

You would think that a “seasoned “ hemophilia parent like myself would get used to hospitalizations, bleeds, infusing every 3 hours, doctor’s visits, and blood draws.  But the reality is that you can never be completely emotionally ready to see your child struggle. 

A 7 year old shouldn’t have to rely on a walker or a wheelchair or have to miss tons of school.  But that is part of our reality with hemophilia and an inhibitor.

I’m just grateful for my son, just the way he is, struggles and all.

It Never Ends...

We are finally back to dosing "Christian" once a day.

Monday is coming and he will be back at school (with a wheelchair for a few days)!

He wakes up this morning with a lump over his eye...he fell out of bed and hit the nightstand...

It just doesn't end...you just have to laugh sometimes and count your blessings :)

 

Posted with Blogsy

A New Target Joint

So much for "Christian" getting back to school after Christmas vacation...

He is having a pretty significant knee bleed. Just when we thought things were going well and we were looking forward to "schedule". And it looks like it is unofficially a new target joint...Right knee and right ankle.

What's hard to believe is that he is not in extreme pain. His knee is 2.5 centimeters larger than the unaffected knee. When his ankle bleeds his pain is uncontrollable.

I guess every joint is different in how pain manifests.

Q3 continues.....

 

Posted with Blogsy