Yesterday was a busy and tiring day for little Colby. We arrived at Vanderbilt at 1:00 and did not get home until 5:00. I'm just glad that the MRI that was scheduled for 10 am was cancelled...that would have made for an incredibly long day! Apparently, when they originally scheduled the MRI, they did not arrange for a cardiac anesthesia team. Since he is a heart baby, the regular anesthesiologists could not (or would not) sedate him. So, they called me Monday afternoon to tell us we would have to cancel it for now. I was extremely happy about that! After speaking with Dr. Barnes, our neurologist, we have decided to postpone the MRI until after Colby's next surgery. We probably won't even think about it until he is around 18 months. Yeah!!!
We did still have his EEG yesterday. That is an ordeal to say the least. This is a test where they attach several (and I mean several!) leads all over his head with some sticky gel. Then, they wrap his head tightly to hold all of the leads in the correct place on his head. Colby did great while he was attaching the leads and wrapping his head, but after a few minutes of having to stay still and wear his crazy "hat," Colby decided he was done. He cried for what felt like forever. The poor little guy was miserable and completely exhausted. I can't believe that they expect a 4 month old to be still with all of that on his head for 20 minutes to an hour. Oh, did I forget to mention that they also want to have some of the test record awake activity and some sleep activity. We actually did finally get him calmed down and asleep. Then, the tech said, "okay, we will record 4-5 more minutes of him sleeping and then I need you to wake him up." Nice...we just got him to sleep and now you want me to wake him back up!?!? Fortunately, Colby was smiley as always when we woke him up. He is such a trooper!!!! After the test was complete, the tech pulled all of his leads from his head and attempted to wash out the gel. That stuff is so sticky!!
We then met with Dr. Barnes. He brought us the good news! Colby's EEG was completely normal!!!! There was no seizure activity at all! We are thrilled with this news! What a relief! Dr. Barnes then examined Colby and was very pleased with his eye contact, head control, ability to push up while laying on his stomach, and his smiles and coos. Dr. Barnes feels really good about the progress Colby has made. He thinks Colby should be seizure free for the next few years. He may still experience some problems as he gets older, but that will all depend on how much (if any) damage was done to his brain when he had the seizures. The MRI that we do when he is older may help us determine more information, but for now Colby is looking good! We will follow up with Dr. Barnes again in 6 months.
Below is a picture of Colby with his crazy "hat." I'm sure you can understand why he was not happy! We are just glad it is over!
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