Port, PICC Line, Autonomic Dysfunction, Oh My!

Will is totally into whittling right now. Yes, I know that sharp knives can be dangerous in the hands of a 13 yo, but then, occasionally, a knife is dangerous in my hands...Of course, you might have read that wrong. What I meant to say is that I tend toward self destruction after Billy sharpens my knives, so he tends to delay the sharpening until I whine loudly. I can either cut the food with great effort, or I can cut me with little effort and bleed all over the food that is now easier to cut. :)

Anyway, Will wanted to know when our next doctor's appointment was...not because he wants to see yet another doctor, but because there is a woodworking store in Richmond that he desperately wants to visit. He has whittled all sorts of cool things recently, so he is looking for new tools with which to hone this new skill.

So, it looks like we may get that opportunity soon. The last few weeks Will has been reacting to the needle used in his infusions. With peripheral IV's (the ones they put in your arms or your hands), the needle is removed after a plastic catheter is placed in your vein. With Will's port, though, a 1/2 inch needle, called a Huber needle, remains in his port until the infusion ends. After 8 hours, I don sterile gloves and a mask and remove the needle. The only problem is, huber needles are made of stainless steel. Did I mention that Will is allergic to stainless steel?

So, after a few weeks of infusions with the port, Will started to complain of itching at the needle site. Then it actually got red right where the needle passed through the skin. That is when it hit me...um, from what exactly are these needles made? Oh, lovely. So, today, when I deaccessed the port, the entire area is red. In other words, the reaction is getting bigger and we can't locate a Huber needle that is not made of stainless steel...and so far I have called five manufacturers.

Tomorrow, I will continue my quest of locating a non-stainless Huber needle while Brooke, our amazing nurse, calls oncology physicians to see if anyone else has had this issue. Until we find another needle, we may have to return to peripheral IV's, which none of us want because finding a vein when he is down is really challenging and painful, and he has less mobility because he can't use his arm. And 8 hours is a long time to not use your arm. They are also discussing putting in a PICC line instead of using the port, but that has loads of other issues...like he couldn't swim and the risk of infection is greater...and it would be in his upper arm which would be very visible...Not something a 13 yo would readily accept.

So this is lining up to be one of THOSE weeks...we may have to go to twice a week infusions (each six hours long) to control his blood pressure, we may have to find yet another alternative to the port, and he gets a CPAP machine this week...all things that are such normal battles for 13 year olds. Really.