It's been such a long time since I've been able to pull up this page. Every day I think of things I want to say or things I'd like to share, but the force that keeps me from opening the computer is strong. Maybe its enemy warfare or maybe its just a general anxiety attached to this precious outlet I had for years. Either way, I'm writing today and from a very unfortunate, familiar place.
Room 710. A room we've seen before, a place we know like a grandmother's home. LeBonheur's Neuro floor. Lucy is fine but gave us quite the scare this week. On Sunday she slept all day and started to run a high fever. The next morning she was admitted for dehydration. Due to her crazy medical history she was to be monitored closely, which turned out to be a blessing. After being at the hospital for several hours Lucy had a large seizure followed by 3 more over the next 30 minutes.
She stayed in the ICU for a day and a half and now we have made our home back on familiar ground. It doesn't look as if we will be leaving any time soon, much to all of our disappointment. We are praying that if all cultures and tests come back negative she may get to come home next Tuesday. The task for Infectious Disease is to determine what happened, why, what medicine to continue and its dosing and duration. No small feat when you have very little information to work with.
I have to tell you its a bit surreal to be back up here as a patient. I am here quite often as an ambassador for the Go Lucy Go Foundation. We serve meals, we provide financial assistance to families and I work as a mentor. But being back on this side of the door is different. And its hard.
I kind of wonder if God wasn't making sure I never forget what its like to walk the halls as a worried mother. I've been reminded that families are hurting, they are scared and they are in need. The feelings of all those first days so many years ago haunted me as I walked the halls last night.
Lucy even had to take advantage of the clothes closet that Go Lucy Go keeps stocked. Thank goodness we bought all those like girls undies!
For those of you who still follow Lucy's story and have waited on an update, I apologize. I'd give an excuse but I don't really have one. All I can say is that opening the computer is just hard.
I would, however, like to invite you to help us continue our work at this amazing hospital. If you are so inclined, it would be amazing if you would sign up as a Spirit Runner for the 6th Annual Go Lucy Go 5k/10k. With your Spirit Runner registration you will get a t-shirt mailed to you! If you are local, there is still time to register to run or walk in the race. Here is our t-shirt this year (we kind of love it!)
All of this can be done on our NEW website. Go check it out!
golucygo.org