Stuck in Limbo Land

Good morning,
Charlotte had a pretty good night except for some drama taking vitals at about 4:30am. Her temp was registering 95 degrees so Nurse Suzie was trying to take it orally, which CJ was having none of. It had actually worked earlier in the night but I think it was only because she was unconscious.

After a bit, I just told Suzie not to worry about it since it wasn't an issue and not worth the stress. This morning's temp read 97 so we're cool.

We talked to Meredith via Skype/Hopecam as well as Reese and her mom. I think Reese was far more into it than Charlotte this time.

Rachel and I spoke with the pediatric psychologist, Dr. Bitsko this morning to kind of take a look at how we're doing. The bottom line being we're really tired and definately feeling the stress but not to the point where we need happy pills.

CJ had a small BM yesterday which was not much fun and nothing since. We tried to get her to take some Docusate (sp?) but that's about as easy as getting the cat to take his antibiotic (without the claws). We've asked about magnesium citrate which she will take and it seemed to work at home. Word on the street is that they have ordered the mag citrate. Now we are just waiting for the results of the CT scan and orders to take out the ventric. In fact, the neurosurgery resident just came in to check on her so we are moments away....

(The previous was mostly Roger's post from earlier today. Now I will put in my two cents):

First a big thank you to Grandpa and Juanita Bonita today. Roger and I had to fly in different directions this afternoon for Romp n' Roll so it was yet again good to have them around to keep Charlotte company. Plus, Juanita has been cooking away and keeping us well fed and the freezer is getting stocked with even more goodies!

I can't believe it's June! In some ways this has been both the slowest and fastest 6 months (or so) on record. I guess it's no wonder I'm drained (physically, emotionally, etc.). Dr. Bitsko made a point today that reallly hit home: for most families dealing with stuff like this at this point in the process, there is usuallly some stabilization. Families will still be in treatment but at least have a plan and a terminal goal for treatments. We are still stuck in limbo land. That is one of the most frustrating things right now. We started out running a marathon and they have changed the course.

It reminds me of the time Roger ran the DC Marathon right after the war in Iraq started. The organization organizing the race backed out but many people planned to run the race anyway. Because it was an unofficial volunteer effort, the runners had to run on the sidewalk instead of the street, there was minimal police coverage to handle traffic and they even changed the route. It was (to say the least) kind of a mess. Roger and I BOTH got lost in the process of the race and he didn't run a good time because of the delays. Does it seem even more ironic that he ran that race to raise money for St. Judes Childrens Hospital that year?

Anyway, so we are on this long course but we dont' know if we are running a marathon, an ironman, or a 100K race. We don't event know where the finish line is. It's a little...ok a LOT frustrating. Here's hoping we will get some answers soon regarding our next path.

Gotta run while we get a ventric out!

Rachel