Update from ICU

I promised an update last night and I failed to post it, but events today were so significant I am going to blend that with today’s post and bring you up to speed. The fighter took a really strong punch from an unrelenting seizure that grabbed him from 6:45am until 1:15pm this afternoon. He was staying at Doernbechers for a Video-EEG, this was a chance for our amazing neurologist Dr. Colin Roberts to remove Noah from his medication and hopefully capture a seizure on video and through monitoring the electrical activity in his brain during periods of seizures.

Amy and Noah checked into room 31, a small room with a bed for Noah and one for Amy. He was sedated and hooked up with electrodes, if he was out of the bed he had to have a backpack on to hold the equipment. Amy and Noah were under strict orders not to leave the room; a video camera had to be on them at all times. While Noah did not have any activity on Monday, today brought the largest seizure he has ever had.

Noah likes to play with some of the toys in his bed before being ready to jump out and start his day. He will often play with his bottle, banging it against the side of his bed, or crinkling the bottle. Amy woke this morning to a noise similar to that, after a few moments, she peaked at him from her bed and saw him face down, and in the grips of a seizure unlike anything we have ever seen. She followed her directions, marked the seizure by pressing a button on the recording device and called the nurse. A code alarm was issued and a medical team was brought in to treat Noah. After he began having difficulty breathing he was brought down to the ICU where a ventilator was brought in. At this point Noah was heavily sedated by multiple medications, all failing to stop the seizure.

Two large doses of Phenobarbital eventually ceased the seizure, nearly seven hours after it began. The strength of the dose will leave him knocked out until (most likely) tomorrow morning sometime. He will be slow to regain control of his faculties, but Dr. Roberts is fairly sure that no longer term damage has been done. He is a fighter, and the doctor and nurses have all commented on how hard he was working to fight against the seizure. It was the most trying day we have had, but Noah doesn't stop, so neither will we. Though this day was incredibly difficult, the good thing is that now Dr. Roberts has the information he needs to better isolate the seizure and develop a more appropriate and effective treatment plan.

This is an incredibly fast recap of what happened today. I wanted to just get something up because I know there are a lot of eyes on this blog waiting for updates. I wish I could be more eloquent in my recap but frankly, Amy and I are a bit numb.

I do want to add one thing. Doernbechers is perhaps the most special place I have ever been to in my life. In room after room, kids lay in beds fighting for their life. Some have cancer; others have tumors, heart problems, kidney problems, or like Noah, a traumatic seizure. They never give up. They never stop fighting, for many, a stop in the fight means their heart no longer beats. We owe it to each of those kids fighting to live that we honor them by living our life like we never have before.

In the room next to Noah, a child no older than 2 lay in a crib. She was surrounded by family, and in a chair next to her, an older gentleman played a harp while the family let her know how much they loved her. That little girl may not know a tomorrow; she may not know another sunset, or the end of that next song being played on the harp. So live today. Love today. Most of all, give the most loving embrace to someone close, and tell them how much you love them; you may not have another chance. You may not have another tomorrow.

Love to all, and please keep Noah in your thoughts. He is a fighter, and will wake up swinging.

Best,
G