Monday, November 05, 2007

11/5 Worse...Then Better…Again


Back to the HospitalAfter the positive bacteria growth from two weeks ago we all took a let’s-see-what-happens approach. Well, the fevers sustained and Josie was ordered back into the hospital on the 27th. She kept spiking 103°+ fevers even though she was pretty much radio-active with all the big-gun antibiotics on board. Better safe than sorry was the call, but it was really more of a we-know-there’s-something-pretty-bad-going-on-in-there situation.

The conclusion was that Josie’s PICC was infected because the blood sample from the PICC was the one which grew the nasty bugs while a clean-stick blood sample did not grow the bacteria. Time to replace the PICC. They had scheduled a surgery for Josie to have the PICC replaced for Monday, but since it was pretty clear the PICC was the bad guy here they just yanked it out while she was in the hospital that Saturday.

We got to thinking about things and thought we should at least consider not having a new PICC put in at all and just deal with sticks and pokes whenever Josie needed a blood draw or IV medication. We asked Josie about the idea and that she’d need fresh pokes with the big nasty needles every week or two. Not too surprisingly she said she could handle the pokes every now and then rather than maintaining and dealing with the PICC (which she did not enjoy much)…so that’s what we all agreed on. The Doc’s were on board with the idea too as they are always of the less-is-more philosophy. Besides, Josie takes pokes better than the toughest he-man I’ve ever met (she continues to impress the nurses and lab techs as she doesn’t even flinch at needles and pokes…she just holds out her arm and watches them wrap the elastic around the arm and plunge what must look like a railroad spike right into her arm – without the slightest hesitation – is really is quite impressive).

Surprisingly, Josie was discharged on Sunday with a fresh peripheral line in her hand and no PICC. We then gave her the remaining IV antibiotic doses over the next few days, and then she received an IVIG dose that Wednesday at home…and with that they removed the IV line and she was PICC and peripheral free for the first time in almost 18 months. One more tube down! Now the only remaining tube is for food, and that’s just fine.


Halloween night brought out all the usual suspects, and Josie was out there trick-or-treating with the rest of ‘em. She was dolled up as a cat with a tail and whiskers and ears and the works. She was as excited as the rest of the gang to head out for the annual sugar mega-high. The weather was cool, but not too cool, and no rain…so it was perfect. All had a great time…and it was only after it was all over that we realized the camera was missing (can you believe it?)! So we may have to dress everyone up in their costumes again for a phony Halloween photo shoot. The next day there was a minor tragedy when the dog found Josie’s candy bag and ate it! Every spec…wrappers and all…the only thing left was the torn up bag and clear slobber smears on the floor. Of course this was simply a minor set-back as the other kids grumpily ponied up part of their candy mountains for Josie…but it’s not like she’s gorging on candy and blimping out…it’s more of a nibble here and bite there. Halloween is so much fun.

Better Skin

Things are good on the skin front. All those worrisome spots on her legs have magically improved. Dr. Vehe thinks the infected PICC was throwing her immune system into a fit which was causing this flare up. Since the PICC was removed a week ago those trouble spots have dramatically improved with her skin. This funny disease keeps us wrinkling our noses and shaking our heads with frustration and wonder. What’s next, we always think…and the conclusion is that it doesn’t really matter…we just keep adjusting and rolling with the situation, and hopefully make collectively good decisions along the way.

So…things are relatively great and we’re feeling pretty good for the moment. Certainly we’ve got issues with nutrition which we’re trying to get a handle on, and her skin isn’t totally awesome, and there are still subtle signs of disease activity…but she’s doing way better than just a couple weeks ago. It’s nice to see – and she’s not quite so crabby either (wish I could say that about her big bro’).


Anonymous Anonymous said...

o.m.g. ur daughter is so cute i am a diabetic so i am in and out eswell so hope she is well
lots of love chloe

2:49 PM  

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