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.