Wednesday, October 14, 2009

We're here!

I've gotten some feedback lately that people are missing the frequency of my posts about Julia...I apologize! I know we have a ton of people following her progress...and as I continue to hear about friends of friends that are rooting for her, my heart just swells with gratitude. It blows me away to think of all the people reading about and cheering for our sweet girl. So thank you!

Today we had a little bit of a scare. The fever has continued, despite my last update about the break we'd had last week. It has still mainly been in that 100-degree range, which is considered low-grade when it comes to this type of thing. Yesterday, however, she spiked a 102 degree temp while our home health nurse was here changing her PICC dressing. This caused a flurry of phone activity as to what to do, when to take her to the hospital, etc. We had never received any guidelines on this so while I was interested to hear what Detroit had to say on the matter, I still hesitated to rush her to the ER, especially with the H1N1 stuff going on and all of the stories I'd been hearing of crowded waiting rooms and long wait times.

So Detroit said they'd get back to me by tomorrow and I put it out of my mind, especially since she'd still continued to be her normal, sweet, hungry self (seriously, the girl can eat!). Then this morning...and a 104 degree fever. I've never seen such a high temp and to say it scared me is putting it mildly. I called Michael, said we need to get her to the ER, and away we went. After about 5 hours in the ER, we came away with the same outcome as all of her other tests...low white blood cell count, low CRP, no infection, normal chest x-ray, normal urine short, no explanation for the fever. Detroit was on the phone the whole time with Cincinnati and in the end Dr. Sood felt the Vancomycin must be to blame. So she's off the Vanc for at least the next 48 hours to see if the fever goes away.

If the fever comes back he said we'll remove the PICC line to see if it's an infection caused by that. But he feels she does not have a true infection because her behavior is fine other than the fever. For now I'm relishing the thought of the next two nights and beyond of uninterrupted sleep. Getting up at 12:30am for her 1am Vanc dose has already gotten quite old and I'm more than happy to not have my sleep interrupted!

In other news, the healing continues. The only deficit we are seeing continues to be that right sided weakness. We have started therapy and she's getting both PT and OT three times a week. Speech has been kept to once a week since she didn't suffer any loss with the surgery. It's a bit of a rough schedule and it wears Julia out, but she's responding well to her therapists and it's doing her a world of good.

Will update tomorrow with hopefully good news...fingers crossed for no more fever!


Helen said...

Hope everyone sleeps well. Thank goodness there are no seizures related to the fever.

Sophie's Story by Elaine said...

I hope the fever goes away completely so you can concentrate on recovery.

I have been thinking about you all a lot so thank you for the update. I know how crazy it can be post-op and then to have to deal with the extra issues you have going on.

JSmith5780 said...

Hoping you had a fever-free night and you all got some much needed rest!