Results from the EEG

The big meeting to discuss the results from our traumatic Video EEG was today. I stayed home to pick Owen up from his first day of school while Geoff, with the capable assistance of his sister Lisa, met with Dr. Roberts.

Dr. Roberts said he was able to isolate the regions of the brain where Noah's seizures occur: the frontal lobe and the left temporal lobe. Knowing this helps us determine what medications may work best for him and as a result we are moving him to a new medicine that hopefully will mean no more "bad days".

Dr. Roberts was able to determine that the left temporal lobe is underdeveloped. This may be a result of seizures or may have existed before them and is just exaserbated by the seizures. This is the communication center for the brain, so this explains Noah's speech delays.

Noah's frontal lobe is badly damaged by seizures. This is the impulse control for the brain. Noah's hitting, biting, and general brawler behavior can be explained by the damage in this region.

Hearing that Noah's brain has damage caused by the seizures made me think of David Axelrod and his family. If you weren't already aware, he is President Obama's Chief of Staff and his adult daughter has struggled with Epilepsy since she, like Noah, was 7 months old. He and his wife, Susan, who runs Cure (an epilepsy research charity) had talked about how awful it is each time your child experiences a seizure and you know it's doing more damage and making your child's job to recover one step more difficult.

Dr. Roberts said that he cannot predict the future but he thinks it will be more likely for Noah to always be behind his peers. What works in Noah's favor is that we have been aggressive in pursuing treatment for his seizures and therapy to help him compensate for his struggles. He only just celebrated his 3rd birthday and the human body can recover from so much.

Geoff and I were sad to hear the Doctor confirm what we were thinking; that Noah will probably always be in Special Ed and will need life time care. But really that doesn't change our plan: to insure Noah has as many opportunities to achieve everything he can.

Our Boy is doing Well

Noah is getting stronger every day. He is back to not really napping and getting himself around. We are so glad he's doing so well. We will keep you all updated after we speak with the neurologist (who's name I vow I will one day get correct).

What Noah had to deal with in the Hospital

Noah's Recovery

We were hoping to leave the hospital Wednesday, but we stayed until Thursday. Little Noah just couldn't wake up. With all the medication and the intensity of his seizure, he slept/was unconscious for 24 hours straight. Over the next 12 hours, he would wake briefly and then sleep a lot. Noah had to eat and drink before he could lose the IV. As the ICU doctor said, we couldn't take the saline bag home with us. Wednesday night, he finally drank some juice and Thursday morning he ate a pancake. Geoff and I felt very fortunate to take our baby home from the ICU, not all parents get to do that.

Little Noah's recovery has been steady. On Thursday, he could not sit up by himself. But he kept trying. He wasn't really able to walk until Saturday, but again, not from a lack of trying. Noah personified getting back up when you get knocked down. The last 2 days he is sleeping less (more normally) and getting around better. His Neurologist thought he may experience some temporary communications delays because his seizure was located in the temporal lobe which has a communication function for the brain. But he has retained his signed words and is still doing his true babbling.

We will meet with our Neurologist in the next few weeks to learn what he has about Noah. Noah definitely gave him plenty of information about his seizures.

Please all of you who emailed, Facebooked, or left us messages here or on our phones, know how much that sustained us during this really hard time. We really felt all of your love, prayers, and good wishes and it meant the world to us to know we had people who cared about us and our little guy. Thank you. Love, Amy

LIVE FROM THE ICU...I WISH IT WAS SATURDAY NIGHT!

Well, hear we are again. Noah is still heavily sedated and having a tough time working through the multiple medications, so the doctors thought it would be best to keep him for another day. He ended up having another seizure at 6:15, compared to Tuesday though, it was uneventful and short at 5 minutes.

Tomorrow is another day and another round in the fight. My prediction: Noah K.O.'s in the next round and is home and in bed by 6:00pm. A short posting tonight, I am exhausted and I have a long night of watching and praying for the fighter ahead of me. We will of course post again tomorrow to let you know how he is doing.

I want to end tonight with lyrics from a Jack Johnson song "Angel." Dedicated to the most beautiful and wonderful wife I could ever wish for. I love you Aimes!

_____________

I've got an angel
She doesn't wear any wings
She wears a heart that can melt my own
She wears a smile that can make me wanna sing
She gives me presents
With her presence alone
She gives me everything I could wish for
She gives me kisses on the lips just for coming home

She could make angels
I've seen it with my own eyes
You gotta be careful when you've got good love
Cause the angels will just keep on multiplying

But you're so busy changing the world
Just one smile can change all of mine

____________

Best,
G

Big Better Day at the ICU

Hooray! Today is a better day for our little Noah. After his massive seizure yesterday, he has not experienced another. He has just been sleeping off the elephant dose of medicines he received yesterday morning. At about 830am his ventilator was removed and they just officially removed the ventilator machine from the room which means everyone is confident he won't need it again. We also removed the electrodes from his head as the docs are pretty confident he won't have another seizure and his neurologist got plenty of information already.

Now we are just waiting for him to wake up completely and demonstrate that he can take some food. If he does that, we can bring home our little guy today. So, he's crusty and stinky, but doing much better.

Owen is also holding up pretty well. He's at a "swim party" at his Aunt Andrea's house today. Geoff has been sleeping at home with him each night and says Owen is having a hard time sleeping, but things should hopefully be back to good old normal soon.

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