Eli was out of the hospital the next day after his laser ablation surgery. I felt weird that after such a major surgery, to the deepest part of the brain, wouldn’t require more time in the hospital. But he seemed okay, looked fine, and I heard similar positive stories from other families’ experiences. We got back to the hotel room about 5pm. Eli was sluggish and hungry. He layed around on the couch watching television and shoveling anything he could into his mouth. He fell asleep on the couch around 8pm and as we transferred him to his bed we noticed a tennis ball sized bump on his forehead. It was quite alarming to see. Over the next two days we called the on-call neurosurgeon twice and emailed pictures of Eli to Dr. Curry’s nurse twice. Eli’s right eye was completely swollen shut for two days. At various other times the side of his face was bulging, and his forehead was misshapen. But there was no fluid coming out of his wound so they did not seem too concerned. Dr. Curry finally said to take him to the ER- where they decided that Eli was having a difficult time with the steroids. His belly was now so big, he has been diagnosed with Disruptive Behavior Disorder probablly caused by the steroids, and he is breathing so heavy. So, they are rapidly decreasing the steroids and he will be off in two days.
Although I am so happy that this treatment option is available I feel like they dismissed us too early from the hospital without too much knowledge of what to expect/look for. I know everyone recovers from major surgery differently, but I guess I just left the hospital feeling unprepared. I heard some great stories from other families who described their children as tired but still able to do sight seeing and felt great very soon after. Almost like it is a breeze. But it still is brain surgery. So I feel it is this sort of non-chalant attitude after recovery that I was okay with, but still felt weird about. This non-chalant attitude continued after I called the on-call docs and sent pictures. And I generally carry a nonchalant attitude myself but guess I wanted more chalant…
It was difficult to see him with such a distorted face. He looked like “Sloth” from the Goonies. But he rarely complained about any pain and still cracked jokes. He enjoyed time at the Children’s Museum and he was able to play with his favorite- “fake food” in the diner. He is such a strong guy!
Eli’s swelling went down significantly over one night. We spent the rest of the week playing in the diner at the Children’s Museum, watching cartoons, and eating like crazy. He ate 22 hard-boiled eggs in 48 hours! Our follow-up one week later with Dr. Curry went well. Its so funny- after brain surgery Dr. Curry had Eli walk on his tip-toes, jump around, follow his finger, and look at the wound. All is well!
Dr. Curry stated in the next few months we should look for three things: 1. Hypothalamic Obesity- where his brain does not recognize when he is full and he continues eating. 2. Short-Term Memory Issues- You may have a conversation and a half-hour later he has no idea what you talked about. 3. Diabetes Insipitus- we will recognize this by excessive thirst and clear urine.
And of course, look for seizures. Even though they weren’t able to get the whole hamartoma, it could be destroyed enough to not cause more seizures. Dr. Curry feels confident that if no seizures show up in 4-6 months, he will be in the clear.
I will make an appointment with our neurologist in Baltimore for local care and will see Drs. Curry and Wilfong again in August.
Eli enjoyed a birthday party today. He was laughing and had so much fun playing with many of his classmates. It is amazing that a little over a week after brain surgery he is able to run around and be lively and cheerful!