Day 1 of Testing

Yikes, today was a long day, yet I find myself wide awake while Luke sleeps soundly. The morning went relatively smoothly: we got the kids dropped off at Donna and Jim's, battled the traffic, got in our room but then I realized I forgot Luke's Frisium. So when you are in the hospital they provide all the medications so you don't actually need yours from home, unless it isn't FDA approved. I managed to bring all Luke's medications except the one that is not FDA approved and the hospital doesn't have. Poor Rob, then had to head home (in traffic), get the medicine and head back (in the traffic). It kind of stunk all around because it took Rob's time away from hanging out with Luke and me and he was stuck on the car all day :(. This was completely my fault, although I remember getting out a new box to bring and have no idea how I failed to put it in the bag. (Lu's artwork)

Despite that HUGE blunder, Luke has been a champ. He has cooperated completely by going into complete shutdown mode whenever any doctor comes near or the nurse has had to do anything. The kid did not budge (besides having a small seizure) while the EEG technician glued the probes on his head. Then the nurse came in to do his IV and missed once, Luke did not move a muscle or let out a single cry. I think the nurse was a little freaked out by his lack of response. Yet when we have been alone he is a complete terror. He doesn't know what to do with himself, wanting to climb chairs and be completely independent. There have been numerous battles already recorded of me trying to hold him down while he is fighting with all his might to push buttons (he is not supposed to) or trying to throw the probes connection. Considering we were only in the hospital for a short day, tomorrow is gonna be interesting.

Tomorrow morning we are starting with a PET scan (Position Emission Tomography). The purpose of the SCAN is to determine a 3D image of his brain, look at the tubers and watch the flow of blood surrounding the tubers. He will have to be put under, which is never fun, and they are hoping to do an MRI as well. If the radiology department can't work him in, then they may have to do the MRI on Thursday. In the meantime the Video EEG is still going, hoping to catch a seizure. For once I am hoping for seizure activity and of course there has been nothing so far. We will see what the morning brings.

(Lu learning to "snap" after the pobes were on)

On a side note, there is a little boy next to us who is scheduled for brain surgery in the morning. A year and a half ago he had a mass in his brain that they had to remove. All was successful, until he started having symptoms again. The mass came back, larger than the first time. As he is preparing for tomorrow I hear him ask his mom, "Mom what is the worst thing that can happen tomorrow?" Mom replies, "Why are you asking, you scared?" The little boy, "yes." The mom did a good job reassuring him that all was going to be fine, but my heart was breaking. So many people have to battle such hard roads, while others have no idea how lucky they are. Listening to them humbled me to my core. At the moment I felt like the luckiest person alive, holding my boy and knowing for the moment he was safe.