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

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.

Noah's Accomplishments

Since my last posting was about Noah's goals and our concerns I think it's important to share also his many recent accomplishments. They seem to be coming along quickly for him in the last 2 months.

On July 3rd he waved good-bye to his Daddy. He has since consistently waved "bye-bye" which counts as another sign for him.

On July 6th Noah decided that yes, a spoon is easier than fingers to eat yogurt. He now will use a spoon for clingy food.

On July 26th with Geoff asking him to say "DaDa" Noah said "du, du". He will do it whenever Geoff asks him to say "DaDa" and two days ago when Geoff got home he said "du, du" looking at him without any prompting. When I ask for "MaMa" I get "ah, ah". It is so wonderful that he is now imitating more vowel consonant sounds instead of just raspberries.

On August 7th with a Hersey bar providing motivation he signed the word "eat". I have been trying to get him to sign "eat" for 2 years! Yesterday he signed it to me without prompting, and then I let him eat a whole roll of Ritz crackers to reinforce it!

Noah also has played side by side with peers for the last few weeks with little hitting or other inappropriately aggressive play. The neighbor girl, Katie is very relieved. I think the neighbor boy, Paul might have liked a wrestling partner though!

So, as we are getting ready to head off to the hospital to see if we can't figure out these scary seizures I think it's important to remember how far Noah has come and that he has accomplished so much. --Amy

Early Childhood Special Education

Yesterday was the meeting with the staff at Noah's school. Say what you will about most government/state run programs, but this one is amazing. Our 2 hour meeting was with his new teacher, our 2 old therapists, the new speech pathologist who will work with him, the nurse, and the head of the program. Noah's class will be for medically fragile children with a nurse present at all times.

We also got some sobering news as we do every time we assess Noah's current skill set; In tests to assess his cognitive, adaptive, social, communication, and motor skills where the average score is around 70%, Noah's scores are around 3%. We have a long road ahead to help our Mr-very slow-and-steady learner. It's when we test his levels that I worry about his future, I have to remind myself that we have to just focus on today and maybe tomorrow. Always looking at the little picture (i.e. not hitting, and learning more communication) as opposed to the big picture (will he ever be able to be independent?).