Friday, July 27, 2007

7/27 More Progress

Things are fairly routing now…even the persistent fever episodes. Lately, Josie’s been hot then normal then hot again then normal and on and on and on it seems to go. She’ll go maybe two or three or four days before the next fever arrives. Thankfully, they’ve all come and gone within a 24 hour period --usually. One time, about a week ago, she spiked one up to 103.6° and we had a bugger of a time getting it to calm down…so much so we had to give the good folks down at the hospital a call and let them know – and of course shortly after that she came back down to normal. Usually the fevers are accompanied by one or two vomits, which are no fun, but tolerable for the little munchkin who’s endured a lifetime of vomits crammed into the last year.

Her fevers being persistent but consistently inconsistent has led the Docs to order up a new PICC (central catheter in her arm). As happens frequently with PICCs, they become contaminated and bugs and slime which accumulates on the PICC material inside the vein. When the body fights off the mild infection caused by the PICC slime, the immune system gives the all-clear and calls back the troops. As soon as the bod’ becomes more vulnerable because the immune system has calmed, then the bugs on the PICC invade again and then it becomes a cycle… a seesaw battle with no ending really possible (at least that’s how this lay man has interpreted the explanation). Of course there is no definitive test to check if that’s what’s really going on or not without removing the PICC…so that’s what they’re going to do. In fact, that’s where Josie is this very moment is receiving a new PICC at the hospital. A fairly routine procedure, but still considered an ‘operating room’ procedure so she had to go into the hospital and be processed just like a major surgery. It should go quick because all they really do is insert a thin wire into the old PICC, slide the old PICC off the wire and then guide a new on onto the wire and then remove the wire…pretty easy. She should be outa there shortly.

Her strength is still gaining! This is good, and still so slow. I think she’s stronger than just before she broke her leg back in May, though that leg is still clearly weaker than the other. When she walks it’s not like a lock-legged duck walk anymore with the strong leg at least. When she lands on that leg there is a knee bend like a normal person and that means lots more strength in that thigh. Her broken leg is still a little locked while walking but showing signs of further strengthening. She’s getting around so well now that she’s been discontinued on the in-home physical therapy as they were simply doing a lot of the things she does all the time at home anyway…and that’s further good news. She’s able to go up and down one stair without help and regularly is getting herself down and up off the floor with greater ease and confidence and strength. Josie’s still going to physical therapy at the office twice each week where they do all kinds of fun workout games.

Josie’s skin is improving from the little flair-up from two weeks ago, yet it’s still clear her Dermatomyositis continues to be active with obvious signs. Her face rash is apparent, as is the hot-spots which are slowly healing, and the reticulated lacey rash on her upper arms, shoulders and back. Her color is ‘pleasantly pale’ as Dr. Vehe like to put it, and that’s better than bad..

Josie’s medicine regimen is still extensive with weekly Solu-medrol steroid boluses, weekly IVIG, daily Orapred steroid, Ursodiol, Protonix, Enalapril, Plaquenil, vitamin C, vitamin D, calcium, Cellcept, bactrim, and Diflucan. She’s had two doses of Remicade over the last month which seems to be helping (unsure). Also she’s on IV fluids 12 hours each day as well as 14 hours of tube feeding. Her appetite is low so she’s still not eating any substantial calories by mouth. Her weight is still about the same at around 37 lbs. which is about 50% more than last year at this time.

Generally she’s doing well. Her attitude seems pretty good most of the time. Her crazy behavior still rears its ugly head far too much – she’s a tough egg to crack, this one. But that’s an issue more on our shoulders rather than her problem…she’s just got us figured out right now.

So it’s slow improvement, but improvement just the same and we can only be grateful for that.

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