Matthew at CHOP – part 2

This is Matthew’s third day at CHOP. Things are starting to wear a little thin for him. Prior to today we weren’t sure we were ever going to talk him into leaving. He loves the “room service” where he can pick up the phone and order food. He loves “child life” with the toys they offer. And he absolutely loved the musician who came and played and sang for him. Having mom’s full, unending attention? – all this makes CHOP the best place ever.

But today… He starting showing some anxiety. “Mommy, I don’t know how to get home. I don’t know how to get there.” “It’s okay Matthew, Mommy knows the way home. I’ll get you there.” Sounds a little like a John 14 exchange, doesn’t it?

Falling flat on his face didn’t help. Having to have an IV started didn’t help, though he was a trooper and in the end he thanked the three young women who did the deed. But mostly he was exhausted – finally fell asleep after a seventeen hour stretch. Yes, he got up at 3 o’clock this morning! (Now that Matthew is sleeping, Joan is trying to do the same!)

As to the seizure this morning? No, the EEG didn’t pick it up. They’d like more time for observation and the hope of catching one (and they are hoping to provoke it by temporarily withholding his seizure med). The plan now is for Matthew and Joan to stay until Sunday. We had other options, but it likely meant returning to CHOP later for more of the same. We figure: We’ve come this far. Let’s try to get it done now.

Thanks for your prayers.

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