EEG UPDATE

Dr. Morton paid us a visit late in the afternoon.  He said that so far since Charlie Claire has been hooked up to the EEG she hasn't had any seizures!!!!!! Such a blessing to hear those words come out of his mouth!

Here are the things that Dr. Morton is currently pleased with:
- He expected to see seizure activity for at least a few days after the surgery just because her brain was "angry" and swollen, etc.  but there haven't been any
- That C is moving the right side of her body.  Dr. M said it's not uncommon for people to have some immediate weakness just due to swelling and irritation but C has not seemed to have an issue with that.
- The hypsarrhythmia pattern that is associated with Infantile Spasms is COMPLETELY GONE!!!!!!!
- The front left area of C's brain never had any seizures originate from there but it was being affected by the hypsarrhythmia. Since surgery the activity in that area of her brain has started to normalize and Dr. M was super pleased about that.

Cause for concern:
There have been some spikes on Charlie Claire's EEG which is not considered "normal" brain activity but they aren't manifesting into seizures.  Dr. M wants to watch for a couple more days before making his recommendation as far as what to do on Wednesday.  This turns into a cost/benefit situation.  If the spikes continue but still no seizures do we leave that area in and if in the future C does have a seizure try and control it with medication knowing that if they can't be controlled she may have to have surgery again.  Or do we have them take it out (which would mean removing her motor and sensory strips) and causing permanent right side weakness. 

Overall, Dr. Morton was really pleased and ENCOURAGED by how things are looking right now but said he wasn't comfortable just yet as far as what he recommends going forward. He said she has A LOT of healing to do and it's good for her to sleep as much as possible right now.

After the transfusion today some of Charlie Claire's stats normalized.  They will check her hemoglobin level in the AM to make sure that has returned to normal level after being so low today. She is still running a fever but no one seems to worried about that right now. C did seem to be a bit more uncomfortable today so they have been working on managing her pain mainly with Tylenol but every now and then they give her something stronger.  Her poor little eye is so swollen and bruised but we are hoping that starts to go down soon and she will be able to open it again. They did give her a diuretic today to help alleviate some of her swelling and there is already a big difference in the puffiness in her hands, legs and feet.

We can not say enough good things about MCV...everyone has been so attentive and taking such good care of our little girl.  C's nurses are SUPER fantastic and have made our stay there very pleasant. The staff is pretty much on a VCU Final Four high right now!

We have a busy weekend ahead with A LOT of visitors!  This will be super helpful with Jackson - he isn't allowed up to the PICU so there is serious scheduling involved so that someone is with Jackson all the time and someone is with C all the time.  The more people around the easier this is!

Thank you all for your continued support, love and prayers! It is amazing how many people are pulling for Charlie Claire and we appreciate it so, so much!!!