Wednesday, September 30, 2009

Turning a corner?

Dare I hope? Have we turned a corner? Yesterday Julia slept all day...literally. From about 9am to 7pm she did not wake up. Most of that was due to the Ativan she got earlier to stop the shivering, and some sedation she received to get her PICC line put back in. But that was by far the longest stretch of sleep she's had since we've been here. From the time she woke up until now we haven't seen any weird episodes, minimial irritability, her fever has been kept in a low range (no higher than 100 degrees), and she's been herself for the most part. We've been able to get her to eat and drink, even though the amounts are still small. She slept on and off overnight and is sleeping now.

They are doing a urine culture to see if the fever could be caused by a UTI. All of her bloodwork and cultures continue to be normal. We also got reassuring news that the staph variety from the original culture is Staph. epidermidis which is treatable with Vancomycin so even if the infection were real (and everything indicates it's not) it's manageable. The other possibility is this is a reaction to the Vancomycin, or related to the thrush.

We wish we could either get her over this fever or get to the bottom of it quickly because this will be the only thing to keep us here. Otherwise she's ready to be released to Cincinnati Children's for rehab. We are still not clear on if we can do outpatient instead of inpatient, we need to learn more about what insurance will cover, differences in services, etc., but being back home will make such a difference for us.

Daniel's first birthday is on Saturday and although Julia's health is the priority I will be pretty disappointed if I miss it. I miss him so much and want to be home again badly. Fingers crossed that it will be soon.


Anonymous said...

Hi. Some more mundane advice today. With the surgery and the drugs in her system constipation can be a huge issue. If she is not having bowel movements it can cause a lot of stress and stress causes seizures. Ask for a suppository to help things along if they are slow. And see if she will take prune juice or miralax. Hope you get out soon.

ELAINE said...

Lisa, I'm so happy to see that she's eating and doing better. Here's hoping you're home in time for the weekend!

Queen Elaine

baby trevor's mommy said...

Oh hon...I SO understand that torn heart. 8 year old...has been SO moody and cranky this week. And I know it's because he's stressed by everything. We've been very open with the kids. Not shoving information down their throats...but allowing them to ask questions. And giving them honest answers. Toby has LOTS of questions. And my heart has been a mess with leaving them behind. But Trevy...he needs this right now.

Parenting is a challenge anyway...but when you throw stuff like this in the mix. Sigh. Anyway...all that to say I GET it. And I'm praying that they hurry up and resolve this fever so you guys can go wrap Daniel up in a big cuddle and celebrate his special day!


Anita said...

Hoping you can be home for Daniel's forst birthday.


JSmith5780 said...

My fingers are crossed for you too!

Helen said...

All family members have all fingers and toes crossed for "Home Sweet Home" ASAP!