Monday, April 18, 2011

Un-fected

We are moving in the right direction - doctors tell us that Scarlett is infection free!  The CSF cultures from Thursday and Friday have come back clean, so we are planning for the new shunt.  The surgeons think that they will fit her in on Wednesday or Thursday.  She also has an MRI scheduled for Wednesday, so Thursday is probably more likely.  She is feeling GREAT, smiling at everyone who comes in, eating plenty and playing with her toys.  Her medications are dwindling back to a manageable 7 or 8.  Her blood counts are up and she is ready to get the last dose of chemo that she was too sick to have last week.

We have learned a little more about shunts.  Apparently, the rate of infection is very high and it is likely that this could happen again.  The new shunt will be placed on the opposite side of her head, the "clean side".  Infections are most likely in the first few months after implantation, so we'll keep a close eye on it through the summer.  Now that we have been through it once, we know what to look for, too: fevers, altered behavior, head swelling.  With every experience, we get more and more aware of her baselines and abnormal behavior.  If I ever notice these symptoms again, I think I would identify it or have doctors check her CSF early on. 

We are also much more aware of the large number of doctors involved in her care.  We feel like we have visits around the clock now.  She is currently involved in Neurosurgery (at two hospitals), Neuro-Oncology, Oncology, Hematology, Radiology, Audiology, Physical Therapy and Occupational Therapy.  All the medical teams have large posses that we may come in contact with; Department Heads, Attendings, Fellows, Residents, Nurse Practitioners, Therapists...I lose track of who's who.  Most everyone introduces themselves as they enter, even if they have been by before, because families get so inundated.  Soon, I'll profile some of our doctors; they are really amazing and so wonderful with Scarlett and us.  We feel very lucky to be in their care, even if there are so many!

I'm watching House (one of my favorites).  It is much funnier to watch now that I am so well-versed in hospital-ese.  I giggle every time the doctors explain a term to each other ("Do an MRI to get images of her brain!"), or actually perform a procedure themselves (they have people for that...).  I used to be an avid ER fan, which strangely has helped me understand some of the jargon...I think I'm just about ready for TV medical school!

17 comments:

bobwendi said...

Absolutely thrilled to read the good news! That is FABULOUS! Keep it up, Scarlett! We're all praying for you!

Jennifer said...

So, so happy to hear Scarlett is doing so well! What an amazing girl she is! Keep fighting sweet baby! <3

Maddy said...

So glad your baby girl is doing better! I check here all the time to see how she's doing each day - I just want you to know your family is in my prayers.

B's Mom said...

Yay for Scarlett not having an infection.

I love House, too. Totally unbelievable, but so fun to watch!

Chrissie said...

It cracks me up to watch CSI:NY, which I love.

"I ran the tire mark through the tire-mark database and found a match to a car down the street."

Yeah, that doesn't happen.

EJ said...

I'm a BBC Sept 2010 mommy, and I've been following your story since the beginning, but I think this is my first time commenting. Glad to hear Scarlett is getting through this! And I wanted to say that I too was an avid ER fan - love me some Noah Wyle!!!!!

skylac8506 said...

YAY!! Such wonderful news all around! We are so happy she is feeling better, acting more like herself -smiling and eating, and that the infection is gone! If we are so happy , I can only imagine how you are feeling :) If it happens next time, you will be so much aware of what's going on and what to do. That has got to help, especially with the racing mind and worries. You will always worry but you will be so much more aware. You guys are doing wonderful!!! Sending love and prayers from the Cozza's in CT

Keri V. Kennedy said...

Glad Scarlett is doing so much better. I can't help but giggle at your comments about "House" and "ER". I too was an avid ER fan, and also loved those Discovery Health shows like "Mystery ER" - now that I've been through so much with my own child I've found it harder to watch. Either that or when I'm in the hospital with Becca I feel really weird watching those shows.

I hope and pray Scarlett goes a LONG LONG time before she needs another shunt.

Marsha said...

So glad to hear she's doing so much better! Such great news! I've been thinking of you all a lot.

Susan said...

So glad to hear Scarlett is improving!

Jamie said...

Thank you Lord! So glad to read good news!

SherylBird said...

WOOT! So happy to read she's smiling at everyone who walks in ~ what a sweetheart!

Amie said...

I am glad to hear that Scarlett is getting better.

I love house too but I always found it entertaining how his Team did everything from MRI's to major surgery and even putting in IV's. Real life is not like that. But it is a great show.

I hope Scarlett continues to get better and stronger

Mersida said...

yay go Scarlett!

Seriously....Me. said...

YAY! So happy for good news!

katy said...

Good girl! Keep on amazing us, Scarlett!! xoxo

Rose said...

Glad to read the good news! Keep going Scarlett!