Noah's Big Bad Day

We came in to Doernbecher Children's Hospital yesterday morning, as you all probably know already, to perform Noah's video EEG. After he was sedated, he had about 50 electrodes glued to his head and then he was tethered to a computer equipped with a video camera to record what he is doing as his brain is creating certain brain waves. Yesterday our big challenge was to keep our bored and annoyed toddler entertained. That all changed this morning.

I awoke at 6:49 am to what sounded like Noah crushing his bottle. After listening to it for a minute, I got up and quickly could tell he was having a seizure and that sound was his throat gurgling with unswallowed saliva/mucus/general ickiness. He was laying face down, so I turned him to his side, hit the button on the recording device to mark their tape and called the nurse. With many frantic medical personnel looking after him and the administration of 4 different medications he started losing the ability to breath on his own and the ability to cough which is critical to self-regulate his air ways. Meanwhile, he is still having seizures. About an hour or so has passed and the decision was made to move him to the ICU where they would intubate (a term I was already familiar with because they were always intubating people on "ER") him which would allow them to continue administering medications to suppress the seizures without concerns about it suppressing his respiratory abilities. In the ICU it still took until about 1:15pm to get enough medication in him to get his seizure to finally end. I was glad our neurologist has a gaggle of medical students and one stood next to me the entire time to explain everything they were doing and allowing me to ask her endless questions.

His doctor was terribly surprised and horrified that Noah had such a dramatic seizure while we were attempting the Video EEG. But he says now his EEG readings are that of a sleeping brain. He also said that if Noah experiences any lasting effects from this they will likely be short term. Noah is still on the ventilator just in case he has more seizures. But right now our plan is to keep him comfortable, and if he doesn't take a turn for the worse, we will remove the breathing tube when he wakes up, monitor him for more seizure activity and take him home. I think they have all the video footage they need to interpret.

My plan is to stay calm and just focus on the very next thing we need to do for Noah. I really think that kids look to their parents during a stressful/scary situation and if their parents are upset they are even more upset and frightened. I hope also that the opposite is true; if I project calm Noah and Owen will feel like things aren't that bad and everything will be okay. Because it will.