He Doesn't Understand

My 15 year old, "Lance", has been very fortunate in his journey with Severe Hemophilia.  He has never had a joint bleed, and has really only had one severe muscle bleed….ever.  He had a low titer inhibitor, one port placed and was immune tolerized within 2 1/2 years.  The port never had an infection.  He had an appendectomy and came through without any problems.

A walk in the park compared to most.

That is why it is so hard to get him to understand the importance of infusing three times a week.  Last night he showed me an area on his upper thigh...a horrible bruise near his groin and it scared me.  That's when I went off on him about the importance of infusing.

 The problem (a good problem) for kids like Lance is that their treatment has been so good and so many bleeds have been avoided, that they do not know what it is truly like to have pain from a bleed (or maybe even know when a bleed is occurring).  Even though Lance has seen his little brother go through hours upon hours of severe pain from a bleed, it just does not register that it could happen to him.

 All I can continue to do, before he leaves the nest, is try to instill in him the importance of his treatment.  Once he is on his own, there is not much I will be able to do, but until then, I'll keep on hounding him about ordering his product and treating.

Just in Time

We caught a bleed just in time.  "Christian" had another bleed into his right knee....that makes me nervous.  The last thing he needs is another target joint.  We are learning that the minute Christian makes the slightest complaint, we need to infuse.

Fortunately he was only in his wheelchair for a couple of days.  He managed himself well at school (it was the first time he has actually gone to school in his wheelchair). 

The one tool we have that we rely on heavily is our tape measure.  It truly helps us to keep an eye on how a bleed is progressing.  The important thing to remember is to mark the place you are measuring to be as accurate as possible.  I never understood why tape measures were so helpful, but when you have a child with joint issues, you learn quickly.
(The picture of this bleed kept Christian in the hospital for several days a few weeks ago).

A Knee on the Mend

"Christian's" right knee is finally on the mend :)  He is moving it around without crying in pain and can straighten it more that it had been previously.

I hate when my son has to be confined to bed.  You do everything you can to help them pass the time, and when they don't even try to get out of bed, you know they are hurting.  I am hoping he gets discharged over the weekend and back to school on Monday (probably with the wheelchair).

Measuring the knee has really helped us monitor the progress of the bleed.  One of our nurses even measured his "muscles" which have been recorded on the board as "huge" and "enormous"!  The nurses here at the University of New Mexico are just fantastic!

Hoping to be home soon.......

It Just Blew Up

"Christian" had been complaining of pain in his knee for severral days.  Last Friday we infused per our bleed protocol and over the weekend, all seemed well...until Monday.  We infused per a bleed again, I went to the school to give a second dose and ended up bringing him home.  His knee was swelling and he was limping.

After an afternoon on the sofa the knee was looking better, until around 6 pm when it just seemed to "blow up".  He has never had a knee bleed before and it looks awful.  Just like the photos you see from Laurie Kelley or the NHF.

We came into the hospital last night and he has rested comfortably since around 2 am (with the help of morphine for the pain).

I've no idea what the day is going to bring, but I am grateful to be at the hospital this morning.

Familiarity

My "Christian" and I are in the infusion suite gettin an infusion of IVIG.  Hie immune system needed a little boost, so we will be out in a few hours.  As Christan says, "easy peasy lemon squeezie".

I really feel like the brace we had made in Denver has made a huge difference for Christian.  So far, no ankle bleeds.  I really think it's giving him the support he needs to keep everything in the right place.

Daily infusions are going well, but he is a bit bruised up right now. 

Things are going well.