I would never try to compare anything in Lucy's life to the great miracles that happened in the Bible. HOWEVER..today's event was as epic as any Lazurus moment in my opinion. You can watch this video that I took and see a little girl who was basically in a coma for 5 days open her eyes and talk. YES!!! Talk!!!
Her interaction with us lasted about 15 minutes and then she was done. She almost immediately went back to sleep and we haven't seen her eyes since. If there had not been 10 people in the room (not all related to me) I don't think anyone would have ever believed it. Everyone was in tears. Even our nurse!
While those 15 minutes will forever be etched into my mind, today continued to be a day of ups and downs. We had a Family Care meeting with our entire team of doctors and were bombarded with tons of information, much more than my feeble mind can process. There are still so many unknowns in this whole equation. I am going to take a moment and try to lay out the facts in note form. This is for my own good as I know that one day I will need to look back at this and remember the whole picture.
What we know:
- An event happened in Lucy's body that caused 40 C (over 104.5 F) fever that persisted for more than 48 hours.
- This event caused her body to shut down and the high fever is likely to have caused the seizures.
- She has lost most of her ability to communicate, minus brief comments and interactions. All of which I must note are purposeful and meaningful.
- We do know that her vision has been greatly impaired. We think she might be able to see something, although we are not sure what or how much. She can not make out faces and can't even tell you if you are holding up a ball in front of her face, but she seems to be tracking.
- During periods of awake time she is consumed with frustration, fear and confusion. She cries for long periods of time although she does not appear to be in pain.
Theories and Facts:
- The doctors are beginning to think that maybe Pink Eye led to a viral infection that leaked into Lucy's brain. Possibly through the shunt. This we will probably never know.
- Today's EEG revealed NO seizure activity and NO brain damage. PRAISE GOD!!!!!!!!
- Today's EEG did reveal a very tired brain that had a lot of recovering to do.
- The doctors do not feel as if the eye sight issues are permanent. This, however, can not be verified until an Opthamologist is able to do a thorough exam. That will probably not happen until Wednesday.
- Most, if not all, of Lucy's deficits are reversible and Lucy should make a pretty strong recovery.
There are so many things that I don't know. There are so many things that I may never, ever know. But what I do know today is that I witnessed a miracle. I saw life in my baby's eyes that I never thought I would see again. I saw a little girl who was created with so much fight not even a life threatening illness or a cancer reoccurance can keep her down. Today was amazing.
For the past week Erik and I have taken turns holding Lucy in a chair for hours on end. We each hold her until either our bladder is ready to bust or our bodies just can't take it any longer. The very thought of putting her in her bed is more than I can take. When we have laid her down we have been convinced that it would be our last time to ever hold her. We have spent many nights preparing to wake up to a child who has passed on to heaven.
But God continues to amaze. He continues to answer our prayers. He continues to use Lucy's little life to touch so many people. I compared this emotional, mental and physical race we are running to a Tsunami. Not a wave that a surfer might ride to reach shore quickly. No, a tsunami. One that starts in the middle of the ocean and travels thousands and thousands of miles with no shore in sight. And quite honestly, I don't even know what shore are we headed for!
The reality is we have a very, very sick child. We know that the 15 minutes we got out of Lucy today were amazing, but there are 1440 minutes in a day. You do the math. It's not very impressive. But those few short minutes were enough to give me hope that I just might get to take my baby girl home and actually have some quality time together as a family. It might just happen. That in itself would be a miracle.
We will be in the hospital for 10 more days. We are going to begin some simple forms of PT, OT and speech tomorrow. While we are here we are going to try to re-train Lucy to eat. If we could get out of here without a feeding tube it would be amazing! What a blessing to get to spend our time together without that worry and fear.
I have been blown away and encouraged beyond belief by the hundreds of comments that have been left for our family. I am humbled that so many people love our little girl. She really is our "light." I will never stop believing for the ultimate miracle.
Never stop praying.