Hospitalization #3

I’m working off the ipad so photos will have to be added later. Well we checked into the Casey Eye Institute yesterday morning where they put Lydia under general anesthesia to give her the most thorough eye exam possible and to rule out any eye problems. They administered a pre-med which made her even more floppy than usual, but she also started making a lot of happy moans so I am guessing she was enjoying herself. Next they carried her back to the operation room while I went to the lobby. They administered ketamine. Dilated her eyes. Examined and re-examined. The procedure took about an hour. Dr. Edmunds came out to the lobby with a smile on her face. No glaucoma, she said. And no megalocornea. Also, Lydia responded very well to the Ketamine and had no seizures during the procedure. Amazing!

Next we had to find our way up the hill to Doernbecher Children’s hospital. Um, I realize this is unlikely, but if you ever find yourself going from the Casey Eye Institute to Doernbecher, don’t try to get there through the buildings. Either drive or walk up the hill outside. It is the difference of about two miles, five elevators and a whole lot of basement corridors with pipes. Crazy. Anyway, after that little wandering adventure, we were checked into the hospital again. The view from our room faces away from the city, so although we are up here on ‘pill hill,’ we see a parking lot. But no matter, there is no time to stare out the window. Lydia has teams of medical professionals rotating through her room. Nurses. Neurologists. Doctors. Phlebotomists. Speech therapists. Dietitians. she had an EEG, a swallow study, and several blood tests in addition to starting the ketogenic formula. Oh, did I even mention that’s what we’re doing here?  Yes,   we are here to start the keto diet with Dr. Carter Wray. It’s what we’ve been waiting for.

she is currently drinking her third bottle with the keto stuff mixed in. i mean really currently, I’m holding her bottle with one hand and typing with the other. they are slowly ramping up the amount of keto formula that she takes in each feeding. It is a lot of measuring, weighing and calculating. She is still having seizures but it might take a few weeks before we see any improvement. I’m trying to be patient.

Tonight is night two in the hospital. I miss my boys terribly. I’ve never been away from Jack this long before. Thank goodness for good friends looking after him.  Not sure how we would have gotten through any of this if we’d ended up in some other city, without our people. Scary to think of.

Anyway, a scattered post but I’m exhausted and just wanted to get an update out there.

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