Well, it's been days since I have had anything substantial to state regarding Will, so I guess it's time to catch you up...
Friday morning, just before the lovely storm hit that dumped another 20+ inches on my supposedly southern state, William shows me his hands...which are a lovely shade of blue-gray. No, this isn't the War between the States, it's my son's autonomic dysfunction rearing its ugly, thought-to-be-stable head. So, in the midst of adding Ruth, the new puppy, to the household, I'm standing on some stranger's doorstep talking to the nurse in Dr. Teasley's office asking about Will's hands. The response is, "If the capillary refill is fine, then don't worry. It's just autonomic dysfunction." Just. Love that word. Not.
So we go through the weekend. Lots of snow. Lots of play. Will comes in at one point and his hands are the blue of a Colorado sky. Hands are warm. Check the cap refill. Fine. Hmmm...Just autonomic dysfunction.
Monday morning dawns...Will's nurse arrives to start his infusion. We review the last two weeks, because she needs the info for the records, and, I realize how much happened in two weeks. We had an ER visit. We were diagnosed with sleep apnea. And we have blue hands. She squeezes his fingers and says, "They are really slow to return to their dusky color..." So, another call to the dr. But by the time Laura called me back, we realized that Will was reacting to the Huber needles that are used to access the port for the infusion. He just has this low level itchy irritation. I call the company that keeps UPS in business and ships us our IV supplies, and we all scrounge to find a titanium Huber needle. (So far, we haven't found one.)
At this point, I realize that we should probably clue in his doctor in Toledo who actually specializes in autonomic dysfunction, and I leave a message. I also have to fax info to Cincinnati that they need to schedule Will's next surgery.
Then the electricity returns (Yay! It was out for 48 hours due to the global warming we've experienced in Virginia this year!). But, as for the rest of the day...The DSL modem died requiring me to call Verizon to order a new one. The dryer isn't drying, so I call Sears to schedule a repair (which of course is ten days away!). I call State Farm because the company who replaced our van windshield a month ago still hasn't repaired the damage they created to my van. Billy, my sys admin, received forty calls from me because MY computer won't boot. (It's been a hard month with me and computers! My netbook is in the shop due to smoke emitting from the USB port.) Let's just say that I am very tired of my phone, but it's about all I have for internet right now, and somehow I need to find titanium huber needles.
So, it's been a Monday. A very blue Monday...
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