St. Jude – More scans

At about 8:30 this morning, Angela called over to Brain Clinic and talked to Katie, our regular care nurse. She said to come on over and see what’s going on.

Our housing at St. Jude right now is TriDelta House. It’s on the campus of the St. Jude Hospital and is just a walk across a few parking lots. We got Summer in a wheelchair and headed over.

We never saw Katie… But Lindsay, her primary doctor went over all the symptoms. She was not aware of the vocal problems and was asking a ton of questions. Ultimately, Gajjar came in and thanked us for bringing Summer in. He said it was the right move. She has lost nearly 10 pounds in the last week and her additional symptoms were worth reporting.

After reading Monday night’s CT scan, he said there was nothing acute creating the problem. No bleeding etc. They suspect it is additional pressure in her spine and it’s affecting all kinds of motor functions.

So, to circumvent her gag reflex on pills right now… They did IV drugs to get her system to start responding more quickly. Steroids for the swelling and something else for appetite.

We nearly spent the whole day at the hospital today. Every time I thought we were going to get a break, they pulled us to another scan or inspection. We did break away after brain clinic so Summer could get a nap and we were called back 45 minutes later. Ultimately, we got back to the room a little after 8 PM and Summer is happy to get to sleep.

The last thing we did was in the medroom. She got some Benadryl and they set her up with a 24-hour bag of IV of saline to recover some hydration. But, that 24hr bag also means we might end up being here till Wednesday morning.

I am making this short and sweet tonight because Summer has to be at the hospital for a spinal MRI at 7:30AM and that means the alarm is set for 6. She is not happy!

Aiden says he can get everything in his RAV4 to get home from college tomorrow. His last final is at 9 AM and he is moving out of his dorm after that. He’s definitely getting the absent parent treatment over the last year. I think he is handling it like a champ. I feel bad.

We had tickets for Future Islands at the Salt Shed on Sunday night. I just let them slide into the mist. We were driving to Memphis and I never had time to ask if anyone wanted them.

Thanks for all the kind words and texts throughout the day. That post last night was a doozy. If I had the time tonight, I could do the same. I don’t. I need sleep as well!