...and we're home

Gonna keep this one brief folks with a promise to reflect more in the days to come. We're home, Georgia got the blessing to go mid-afternoon. Not after a bit of drama with a temp of 104 in the wee hours of the morning. They did a bunch of cultures, blood work and a chest x-ray to make sure she wasn't infected somewhere and everything looked good. Sure enough she broke out in a very viral-looking rash this evening, so it would be pretty unlikely that it's her new shunt. Dr. H was not concerned in the least...didn't even raise an eyebrow at the high temp (though he is a surgeon afterall!). The only fevers he cares about are those that start after post-op day #3. So fevers, go away!

Bit of a different medium for the video - here's a link to our good-bye to Denver Children's. Welcome home sweet baby girl! And much love to all :)

http://www.youtube.com/watch?v=Et54qJnnvnw

Still here..

We thought for sure we'd make a break from TCH today...but alas, it wasn't in the cards. Georgia is doing really well, but spiked a fever mid-afternoon that was a little higher than the docs wanted to see. They gave us the option to wait until after dinner and if she didn't have another fever, go home. Caveat though was if she spiked again later in the evening we would have to come back to the ED. No thanks to that - do you know how many cooties there are in the ED!? So we opted to honker down in Rm 621 for another night. Good thing too, Georgia did have another fever this evening, slightly lower so that's a good thing. Nothing too much else to report...stay tuned!

A few more shots from recent fall activities to leave you with :)

First horse (well, mule) ride on Nester at Cider Days

Flexing her muscles on a wagon-pull while pumpkin hunting

And we should include one of the littler pumpkin too

and to all a good night!

De ja vu...it's past 11PM and I am just now settling in for the blog update, propped up on the pull out "bed," front to Georgia sleeping like a rock, back to the dark Colorado sky and trace outlines of mountains in the distance. I swear it's a time vacuum here in the hospital - where did the day go!?

In a nutshell, Miss Georgia is doing wonderfully! No complications from the procedure. She woke from anesthesia great, got some xrays that showed good placement of the shunt and drainage catheter (strong work Dr. H!), had some jello and water (dinner of champions), watched Barney and then drifted off to dreamland. While she was still a bit groggy, she seemed to also have re-found some of her clarity in the past few hours. Tomorrow will tell.

Sleep well, little angel, we love you and are so incredibly proud of you. Three brain surgeries by the age of 3 and a half? That's one hell of a dance card.

Love to all from Denver - and thanks once again for all of your continued thoughts, prayers, and love for our sweet Georgia.

quick update...still in OR

No news is no news here...got a late start in the OR so Georgia is still back there. No calls from the OR staff besides to tell us when they actually got started (after all the prep), so that is good news. In true Georgia fashion, she was again a rock-star waiting for more than half the day without food. Had an IV dose of benadryl to premedicate for her antibiotics (they give a pre-op dose of vanco for those who are curious...they use the big guns in these cases!) so she took a nice snooze after her spa hair wash.

More details as we know them....

Checking in


Crazy hair after her spa treatment

Singing for the nice ladies in the surgical waiting area

holding out for Handler

Just a quick note to let everyone know we decided to hold off on Georgia's shunt placement until Friday when Dr. Handler returns. We pretty much tapped all of her specialists for their thoughts on whether or not we could wait the 3 extra days, and it was a unanimous yes. Bottom line, there is minimal risk to wait longer and we feel much more comfortable waiting for the doc who knows her best. To quote Dr. Handler, it'll be his own "footprints" that he will be walking in. So let's send lots of good, refreshed thoughts to him as he returns from his conference on Thursday.

By the way, for those who are curious, when asked if Georgia will have any activity limitations with the shunt, she will: no sky diving and no scuba diving. I think we can live with that.

A photo to depart on (we finally got our new camera up and running!):

happiness is swinging...

tough choices

Georgia had a much better day Saturday, so we took advantage of having our gang altogether and in good spirits and took off to Boulder for the day to enjoy the outdoors and do some prime pumpkin pickin'. See pics below.

On the surgery front... it turns out that Mon won't work for Children's OR schedule, so the earliest option now is Tues. While that gives us some time to think thru the choice of having the shunt placement w/the newer surgeon or waiting until Dr. Handler gets back in town and having him do it on Fri (earliest possible date w/him). We'll likely make that final call tomorrow when Georgia goes in for her pre-op exam.

One other thing we have to consider and haven't mentioned yet... botox injections. While I'm sure Alicia and I could use some of that ourselves to get rid of our stress lines, botox is actually used to relieve the stiffness in Georgia's joints and muscles. Currently, Georgia has to wear a variety of braces to help maintain her range of motion w/her left wrist, fingers, thumb and ankle. Good as those braces are, she's still tightening up a bit too much and so the botox will give her some added relief by temporarily knocking out the muscles in her arm and calf. Since Georgia will be under anesthesia for the shunt we may take advantage of that time and have this procedure done at the same time. Otherwise, the poor kiddo will have to make yet another trip to the OR at a later time.

So here's the choice: 1) have the shunt placed Tues w/the new surgeon and have the botox procedure at the same time or 2) wait until next Friday for Dr. Handler to place the shunt and come back at another time for the botox injections (since rehab docs aren't available until the following week).

Given that persistent hydrocephalus is the greatest concern, we'll likely move forward w/having everything done on Tues; however, if the fluid build up is manageable for a few days, we may wait for Handler since he's one of the best there is and knows G's situation better than anyone. We'll of course keep you posted as to what we decide.

In the meantime, here are some videos from yesterday's outing - a much needed break away from thinking about hospitals and surgical options.

Running around Cottonwood Farms

decisions, decisions

Couple of cute swingers in Boulder

Capping off great day w/ice-cream!

not out of the woods yet

Hi folks,

Sorry we've been off the grid for awhile. Normally no news is good news and as you all know, Georgia has been making incredible progress since her surgery in July; however, things have taken a bit of a turn lately and so we wanted to keep you in the loop w/the latest developments.

Clearly Georgia has benefited from having the hemi. Without her frequent seizures, her cognitive development has taken off, her social interactions are greater and overall, she's just a much happier, calmer little kid. That said, we also knew her surgery wasn't without risks and it now looks like we may be experiencing some of that.

Over the past week, G just hasn't been herself. She's been rambling in her speech, shifting her gaze to the side or ceiling, less attentive during play and having difficulties sleeping thru the night. Her teachers, sitter and therapists all seemed to notice a change in her behavior as well but noted that it wasn't much different from a typical 3yr old. When you figure that Georgia just had major brain surgery 3mo ago, is going to pre-school several mornings a week and undergoing extensive rehab therapies in the afternoons, it's not surprising that she's been a bit out of sorts from all that activity.

Fortunately though, Georgia's blessed w/an amazing mom who is incredibly vigilant, intuitive and clinically perceptive. As she's done since G was a baby, Alicia has been right out in front of all this and has pushed to get Georgia some new tests to see if the seizures were re-emerging or if there was fluid build up in the brain that may be causing Georgia's disorientation. To cut to the chase, there are no new seizures (wonderful news!) but there is fluid build-up that creates pressure in the brain and is likely causing the regression we're seeing in Georgia's behavior.

The good news in all this is that the fluid build up, clinically referred to as hydrocephalus, is very treatable. Basically a small drain in the form of a small plastic tube, called a shunt, can be inserted into the ventricular space of her brain and divert the extra cerebrospinal fluid (CSF) down to her stomach. It's actually a fairly common procedure and Georgia should recover quickly from it but it is still brain surgery.

Interestingly, of all the specialists that Georgia saw this week (incl rehab, neurology, neurosurgery, neuro-oncology, neuro-psych, endocrinology & opthamology) it was her opthamologist, Dr. King, who seemed to be most in synch w/Alicia's concern about hydrocephalus. His examination detected color changes in Georgia's optic disc that were likely due to swelling from the fluid build up. With his sense of urgency, he pushed for the MRI yesterday that got us the results we needed to have the surgical team recommend the shunt placement. Without his help, it could have been another month or so before we got this information - so big shout out of thanks to Dr. K!

We're currently working out the details of when the shunt placement will take place but clearly the sooner, the better. We have tentative plans to admit Georgia Monday morning, the key issue is that her lead surgeon who performed the original hemispherectomy is not available until the following week. There are some other very skilled surgeons that could do the procedure, which is a fairly simple one for these folks, it's just getting to a comfort level working w/someone new. In any event, we'll do whatever it takes to give Georgia relief and I'm confident that once again she's going to overcome this latest challenge.

We'll be sure to step up the blogging and I promise to let Alicia write them, so you don't have to read my long notes. ;-) I'll just stick to the videos and pictures, of which you'll find a few below.

Thanks again to all of you for your continued prayers and support - it truly means the world to us and to Georgia.

Another day, another EEG

Scoping things out at clinic

G & Lillian go 4 wheeling

Best buds