The Good, The Bad, The Ugly...

This is a long one...consider this your warning and brace yourself!

The Good:
This should really be called the GREAT! First, Charlie Claire had an EEG this morning and the neuro was SUPER pleased with the results.  The front left side of her brain and the right side looked PERFECT as far as seizure activity is concerned! He said this is a huge positive for C's long term prognosis.  All of her seizure activity has remained in the malformed area of her brain which is really a good thing.  Another thing her EEG showed that was good was sleep spindles...I am not 100% sure what these are (I will be googling later!) but apparently you develop them around 3-4 months of age and a lot of babies with infantile spasms fail to develop these.  Charlie Claire has developed them and they look good! :) Lastly, the hypsarrhythmia pattern that is associated with infantile spasms and what is so damaging to the brain did not show up during her EEG.  Granted she slept the entire time and didn't have a cluster of spasms but the neuro said that it is a good thing she isn't having them in her sleep and since the Sabril has really helped decrease the # of spasms that the hypsarrhythmia that she does have during the spasm is minor at this point.

The Bad:
Nothing we really didn't know but there are still A LOT of activity happening in the "bad" area of Charlie Claire's brain.  She is currently on 3 anti-seizure meds and even with that things are still pretty active. 

The Ugly:
Charlie's surgery is officially scheduled...March 30th.  While part of that is good news there is also A LOT of ugly.  We met with the surgeon today and he is SUPER DUPER AWESOME! He is actually from VA Beach and went to the same high school as I did! He had the pleasure today of discussing ALL of the risks involved with the surgery.  We know this is part of his job and he has to go over EVERYTHING with us but wow that was a tough pill to swallow.  The main risk is blood loss.  Apparently, you are only able to lose about 20% of your blood during surgery...this isn't a bad deal for an adult who has a lot more blood.  This is a big deal for a baby though who doesn't have a lot of blood to begin with.  C and I have the same blood type so I will be donating blood for them to use for her during the surgery.  We were informed that since C will be receiving my blood during the surgery that down the line if she ever needed an organ transplant that I would no longer be eligible to be a donor for her.  If during the surgery she was losing too much blood or couldn't keep her blood pressure up they would stop the surgery and let her recover for a week and then go back in and continue.  We are praying that this won't be the case and that they are able to do what they need to do during the first surgery. 

Surgery Details:
March 30th here we come.  The surgery should be around 7am and will be somewhere in the ballpark of 4 hours long.  We were warned today that Charlie Claire's incision is going to be pretty large.  They need access to two areas of her brain and in order to do this she will be having a "barn door" incision.  It will basically go down the middle of her scalp and then another incision will be made to form a "T."  At this time they are not sure about one thing - the grid.  The grid is like an EEG that is placed directly on Charlie's brain.  Right now they will go in and remove what they think needs to be removed based on CC's MRI and by the way her brain feels.  The malformed part will feel different then the "good" parts of her brain.  Once they remove that they will place the grid and close C up.  Once this is done Charlie will go into the Epilepsy Monitoring Unit where she will be monitored to see if there is still seizure activity going on.  If there is then the surgeon will know exactly how much more brain he needs to remove, if there is no more activity then they simply go in and remove the grid.  The down side of that is no matter what she would need two surgeries but at least we would know that they took out all of the damaged area. The surgeon said they will place the grid if they need to stop and continue the surgery at another time or if he has any question that there may be more damaged area that he can't "feel." As he put it "he can always take more away, he can't put anything back" so if he has any question he will use the grid but we will not know the decision until surgery day.  There are a lot of veins and arteries in the areas in which they will be working so this is a very MAJOR surgery (he couldn't stress that enough today)...they will need to work quickly and yet efficiently.  Obviously, there is risk of stroke and some other things that could have life long implications but if we do not have the surgery we will basically be ruining the rest of Charlie Claire's life.  As my friend Julie put it today, "we must have faith the reward will be great." Couldn't have said it better myself. 

I am sure there is something I am leaving out here...we got A TON of information today and our heads are always spinning when we leave. When we catch our breath if we think of anything else we'll update later.

THANK YOU THANK YOU THANK YOU for all the prayers, emails, texts, etc.  I have said it before but we are blessed with AMAZING family and friends! Thank you all - we love you so much!