Our day with AJ

Just like every other post, I cracked open a Coke Zero, got in the recliner, and pulled up the website. However, I am logged on the the "getwell network" at DC Children's Hospital, and the recliner will be where I sleep tonight in AJ's hospital room. I am going to apologize in advance if I dont deliver to you the information you are seeking with the speed you'd wish. I am mostly writing for me; its sort of how my brain works. Sleep has no chance of overtaking me when my thoughts are bouncing around in my head.

This afternoon we were at Flower Valley Park in Rockville having a cookout. I had figured out a way to play 2v2 wiffle ball and after a few innings the ladies got sick of watching us and headed home. Shortly thereafter, I got a phonecall that was a bit garbled, but through the bad reception I found out that something happened to Aidan's arm, and Sarah was coming to pick me up and bring me to the hospital.

At this point I really wasn't alarmed, and the 4 of us began to gather up the bbq stuff that the girls had left for us to lug to the parking lot. Then the Camry pulled up and Jessie got out of the back seat and started running towards me. To be honest, everything was so surreal that I walked even slower towards her, almost dazed. Finally I snapped out of it, hustled to the car, and got in the back with my son.

The 5 minute car ride to the hospital were honestly the worst 5 minutes of my entire life. The "arm injury" turned out to be a twitch, and in the ride to the park it had progressed to involve his right eye and shoulder. Nobody knew what had started the seizure, there was no traumatic event to speak of. As we drove, his right leg began to shake as well, and eventually the periodic spasm seemed to shake his whole body. He was awake and aware, slowly reaching for the hat on my head, but his demeanor was severely slowed by the seizure. As we neared the hospital, he began to drool, and as I wiped it away I began to feel a bit frantic. Even as I re-live this by typing it, tears are rolling down my cheeks. I have never felt worse in my life.

We reached Montgomery General and he was admitted to the pediatric ER right away. I was trying to keep myself together, but I was weeping pretty openly and really looked to Sarah for some support. She was in a very strange place, with her medical knowledge and feelings as a Mom pulling her in different directions. I sort of felt that if I had been with Aidan from the start, I would have been better prepared to deal with the situation, but getting into the back of the car to see my son in the state he was in was devastating.

What really rescued me was the doc who was working on Aidan. He was so calm that he even seemed bored. That might sound strange, but treating AJ's condition like it was completely uninteresting really settled me down. I am sure he could be better described as "methodical," or "even-keeled," but I thought he looked bored, and I felt great about that.

The seizure did not resolve on its own, and after 30+ minutes, medication finally caused my boy to stop twitching. He was completely snowed by the medication, but he could see and recognize us even through the medicine fog, and it just felt good to stand next to his bed, touch his hair and have him look at us. A CAT scan revealed that his hemangioma was what we thought - a simple scalp defect and not something deeper causing a problem. All labs were normal, and his spinal tap was clear as well. On the one hand these results were good - but it left the big question: "Why did this happen?"

During all of this, AJ came out of the medicine induced low. He was quiet during the entire seizure, so to hear him screaming in displeasure during the CAT scan made my eyes well with happy tears. As he cried through 45 more minutes of tests, that joyous "he's back" feeling was replaced with the "he's so upset" feeling, and we did our best to calm him. Shortly after all of this, I took the picture below.

Around midnight, 6 hours after the initial event, we were transfered to the DC Children's hospital. While it was disappointing to not take AJ home - and to in fact drive further away from DE - AJ is now being attended to by a great team of pediatric neurologists. Tomorrow's plan includes an EEG, an MRI, and possibly genetic testing to try and find out what is going on with our little boy. Its scary of course, but here are the things that I (and you) should focus on.

- He has the best care possible right now.
- Before going to sleep tonight, he smiled so big at Sarah and I, tried to eat his monitoring equipment, kicked off everything the nurses tried to put on him, and snuggled his yellow blanket so it covered his face like he always does.
- Right now, the only sound in the room besides the tik-tak of the keyboard is the rhythmic breathing of a sleeping baby.
- If the love of two parents can do anything to help him, he has nothing to fear.

Mom, Dad, Kris - I am sorry to get this info to you this way. I did not want to call you and worry you unnecessarily when I couldnt give you the whole story, and when the whole picture was finally clear it was too late to call. For anyone reading this, Sarah and I both have our phones off because we have limited battery life left. We will call you soon, and may ask you to do the phone tree thing for us. We love you all and we will talk with you soon.

Right now, Aidan is smiling in his sleep, and Sarah is asleep in the bed on the other side of the room. The strange thing is, this all feels like when Aidan was born. I loved the hospital, and even the NICU. Aidan was healthy, just being kept for observation, and the hospital was our home for a few days. I cant help but feel a bit of that happiness now as my family rests in our room.