Cyrs

Cyrs

Thursday, September 19, 2013

HOME!

Well it sure was an unexciting week. As odd as it sounds to say this, sadly Cameron had no seizures at all while we were at CHaD. We had lowered his medicine the first day to half the dose, and completely cut it out on Wednesday and today. The nurses said a few times that they saw some "spikes" happening on the EEG, but obviously nothing that was big or strong enough to cause a seizure. Go figure. With Dr. Morse on vacation this week, we don't know exactly what they want to do, if they want to do anything at all, before the surgery. Doing the SPECT scan is not mandatory for the surgery that they have planned - it was more for "bonus" information, if they could get it. Mostly just to confirm what they already know. Always better to have more information than not enough!
Here's a look at Cam's EEG. It was running 24hrs while we were there.

That said, we won't go back up to do the test again. We could have potentially stayed for one more day to try it again, but with Cam off his medication, he has a high chance of having a seizure due to withdrawal from his medicine, rather than it being an epileptic seizure. If that had happened, it wouldn't show the docs what they want to see, because a seizure due to withdrawals would not come from the "problem" area in his brain. We were all getting a bit stir crazy too. Cam wasn't eating well, we suspect because he wasn't moving, he was bored and sick of that room - heck, I wasn't hungry once. Being forced to sit in a bed when you're three, or 25, or 85 is hard. (Here's Cam having some alone time on his bed. Most of the time either Shawn or I were sitting with him.)
Luckily we did get some visitors! We had Ginger, the Yorkie on Tuesday, then Brody the Yellow Lab came to visit him yesterday!

We got some cupcakes from Meme, and Grandma came to visit too!
Then today Matt came up and brought some Playdo and new trucks!


He did have a vision test with the Pediatric Ophthalmologist - Dr. Erin Salcone at 2:45 today, right after being discharged. Unfortunately, Cameron was pretty darn restless and not exactly thrilled about having his eyes dilated.
She did as best as she could and said that she suspects no obvious abnormalities in his vision. Doing an actual Visual Fields Test requires the patient to sit and look into a "bowl" (as she called it) and press a button whenever they see a light. The test is a little too advanced for our, otherwise genius child. :) She said his optic nerves look great and his eyes are perfectly aligned. She doesn't suspect he would have any problems post-surgery. Good to hear!

While we are disappointed that our entire week spent at Dartmouth sort of ended up being a waste, we do know that Cameron's nurses and doctors are doing their very best to take care of him. They all love him up there! When we walked in on Monday, one of the neurology nurses came in excited and saying "YAY! It's my favorite patient!" It's always nice when other people like your kid too. ;) We were able to schedule his surgery for October 30th - he'll be trick-or-treating at CHaD! We should hear some time early next week about what Dr. Morse and Dr. Bauer discussed related to what EEG info and eye test they have. At this point, hopefully not much changes.

Here's a few more pictures from our stay at "hotel CHaD".
After the IV team had to stick him 5 times, the guy gave him the flush for his IV. This turned into a squirt gun the next day...

His head got a little breather yesterday afternoon when they decided to give him a new "hat" because the wrap was sliding off so much. Nasty hair!

Unfortunately, Cameron didn't get to see this, but they had Super Heros cleaning the windows at CHad! How awesome! They didn't go around the outside of the entire floor (can't blame them, in those suits), and since Cam couldn't leave his room, Shawn got some pictures for him instead.

Also wanted to share this one last thing. I found this when reading some stuff earlier.
"Dartmouth-Hitchcock Medical Center (DHMC) has been designated as a Level 4 epilepsy center by the National Association of Epilepsy Centers (NEAC). The Level 4 designation is applied to hospitals and medical centers that provide the more complex forms of intensive neurodiagnostics monitoring, as well as extensive medical, neuropsychological, and psychosocial treatment, according to the NEAC. Fourth-level centers also offer a complete evaluation for epilepsy surgery, including intracranial electrodes, and provide a broad range of surgical procedures for epilepsy. DHMC's Epilepsy Program, the only Level 4 center in northern New England, meets all of those criteria, says Program Director Barbara Jobst, MD. "Level 4 designation recognizes progressive and innovative epilepsy treatment. We're delighted to have this national recognition for the high-level epilepsy care that is delivered by the Dartmouth-Hitchcock Epilepsy Program." I'd say we're pretty lucky to have the help of Cameron's doctors at DHMC.

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