Not any Better

Well, my son is just absolutely terrified of needles.  The visit with the nurse from our homecare did not go any better than when it's just me and his Dad.  To say he completely freaks out is an understatement.  We just don't know what to do to help him calm down during his infusions.

I think it is an effect from his numerous hospitalizations and the times he has been held down to find veins for IV's.  It been extremely rough for him...things are better now, despite his inhibitor, but you just can't erase those experiences.

Any suggestions on how to calm a child's fear of infusing?  I'll try anything.

We Need a Break

When you live in a rural area with little or no resources to back you up when living with a bleeding disorder, you handle things on your own and hope you don't have to make the 2 hour drive to the HTC very often.

Now that we are living in the big city (and not "on the prarie") we are 15 miles from the HTC and our main home care nurse lives about a mile away from our new home.

I recently took "Christian" in to the HTC so they could check out his port.  It was pretty bruised up and he was complaining.  I mean, it only took me about 20 minutes to get there, so why not have him looked at. 

When the nurse accessed his port, she and the HTC nurse asked me, "Does he fight like this every time you access?"  I answered, "Yes.  We just have to make it work."  That's when I realized that we needed some help.  We have scheduled our home care nurse to come in to help us access for awhile.

We access Christian once a week and infuse him daily.  He is on daily NovoSeven and he is just horribly afraid of needles. 

I took him in to work with "Chester Chest" at the infusion office and he worked with our wonderful nurse.  They talked about ports, touched and even accessed Chester's port.  Christian even practiced how he was going to sit when she come to help us infuse.

We'll see how it goes on Monday.

Gotta love those new teeth

Six year molars. 

It's been pretty messy.

Waking up with bloody sheets and pillows always looks worse than it is, but it's still not fun.  Fortunately, "Christian" is good about taking his Amicar and what really helps to control the bleeding are tea bags.  We do a quick soak of a small tea bag and put it in his mouth over the affected tooth and have him gently bite down. The taste is not great, but he knows it helps.

What helps you control those nasty mouth bleeds?

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).