Annie has Spina Bifida and hydrocephalus. On top of these, she also has an arachnoid cyst on her brain which has required 5 surgeries since we got her.
I'll know she needs to go to the er if she becomes lethargic, (there are many other symptoms, but this one seems to be her main one in regards to the cyst).
Typically her lethargy will remain or get worse until the surgery alleviates the pressure.
Friday night we went to the Red Sox game. For the first hour or so, Annie had a blast. Dancing, talking, animatedly waving, calling, "hi Fenway park! Hi Wally!" Etc
All of a sudden she tells me she's tired and wants to go back to the hotel. She has never once asked to go home/go to sleep, (she's not a complainer!). This was very strange and I asked her a few more times to confirm. Sure enough, she wanted to leave! So we left at the 3 inning, (crazy, right?!), and headed back to the hotel (2 minutes walking distance). I put Annie in bed with the lights and TV on, (I'd put her to bed after my shower). Brooke sat next to her on the phone and I took a shower. I came in the room and she was out! Ok, she must have truly been tired, I thought to myself.
The next morning, she awoke seeing 7:30 asking for milk and I told her to go back to sleep, (a normal morning ritual which I usually do in vain lol). To my surprise she went back to sleep! She slept until 8:30, and awoke to ask to watch a movie, (like I said its a ritual so she was just wanting to be awake). I told her to go back to sleep and to my surprise she again did, (I try this everyday and it usually never works! Lol). We got up and ready for the day shortly after that and Annie stayed asleep. I allowed her to sleep because she obviously needed it the night before. But then it started to get strange again.
I can wake up Annie at any time of the day and she'll wake right up and be alert, (and considering usually once she's awake she'll stay awake no matter how I beg for her to go back to sleep lol). So here she was after sleeping for 12 hours, falling back to sleep the second she opened her eyes. I'd sit her up and she'd slump over like a rag doll and be right back to sleep.
I knew immediately something was wrong. It was either her head or just a uti, both of which would need immediate attention. I debated back and forth about taking her to the er, (we were in Boston for crying out loud and would return home the next evening!). We decided to go down to breakfast and Annie fell asleep SITTING UP IN HER WHEELCHAIR. After over 12 hours of sleep. Something was wrong and Brooke encouraged me to take her to the er, (it was nice to have someone else see something was definitely wrong! Mind you, this is the most lethargic I have EVER seen her).
We jumped on the T and two exits later we arrived at Boston Children's. After hours of waiting and waiting, we were told there was no uti, the cyst was stable and her shunts looked fine. I was not happy. Something was wrong but I was being told "nothing was wrong." It was very hard to leave the hospital, but I had no choice, (and if you're wondering we did salvage what we could of that evening and Sunday before our plane took off, thankfully). :)
Their neurosurgery department is ranked number one in the country! I'd love to move there so I could take Annie there always. But, taking her there during vacation was not what I had in mind.
I was so so thankful I had Brooke with me for many reasons, but I'm glad someone saw how bad it really was.