Cleveland Clinic: Day 8 (Part 2)

The end is near

As soon as we got back into our room one of the techs wheeled in with her cart to adjust Philippe's electrodes. She cut off his head wrap and said "Wow, they all look really bad. I'm going to have to adjust a lot of them, if not all of them. Really, they should probably all come off and be re-done." I was NOT in the mood to hear that. Crystle was gone so I had no one to help me. I didn't have the emotional strength or physical energy, so I just said "Well, we have the MRI tomorrow and they have to come off before that anyway. He probably won't have a seizure tomorrow morning. The EEG was only supposed to be 5 days and it's been 8 days now, so can we just take them off now instead of waiting until tomorrow? We've all just had enough. And they already recorded a seizure, which is all they really need." She called the doctor and the charge nurse. They both came in and looked at his head, which has little sores from the electrodes and all the poking and adjusting. They said it would be ok to stop the EEG and take off all the electrodes. 

Even though I'd been wiping him down all week, Philippe was starting to smell funky. He was so excited to take a shower! He loves baths, but since seizure patients drown if they seize in the bath they don't have a tub. The glue they use for the electrodes is strong stuff! It only comes off with acetone, but since he has little sores all over his head we couldn't use too much. This is what he looks like after his shower:

Brendan is done with his EEG today too so they're checking out of the hospital even though they have some appointments Tuesday and Wednesday (they have different insurance than us; our insurance wants us to stay in the hospital til our appointments are finished). They will be staying at the Ronald McDonald house. It feels lonely and sad to see their empty room across the hall, even though we just met them a few days ago, and they're just 2 blocks from the hospital.  

We've been debating getting Marcel a plane ticket to fly out here just so he can help me fly back home with our kids. We finally decided not to. It would be too expensive if we bought him a ticket ourselves, but since I'm flying standby we might not get on the same flights. And if he flies standby with us, chances aren't great there will be enough empty seats so we might not all end up on the same flights home. Plus he would have to take a couple days off work and we'd be missing out on making money we really need. Bottom line, I'm flying back with my kids alone. I survived getting to Cleveland alone, so I can make it home in one piece with my kiddos :)