Sunday, July 10, 2011

Day Eighteen

James used to love his swing. Faster and higher, always. It's made for nine month old babies and above but we started him around three months because it's just the kind of thing he'd like. I remember the first time I pushed him in it- he just smiled the whole time. I pretended that he was hitting me on his way down, falling backwards and making "boom" noises. He loved that, laughed and laughed. He always got a kick out of physical comedy. Especially if he thought he was winning the fight.

I miss that baby. We saw him for a little bit yesterday, after James got his morphine. As I said, James was wiggling and playing, making noises and talking. Sometime overnight, he went into hibernation again. Overnight he wouldn't eat. This is strange for James, who loves to eat- even when he's not hungry. It comforts him. Still, we attributed it to the morphine. Kara and I are both very sensitive to morphine, so we cut down his dose and hoped he'd get better. He woke up a little and ate around 1:30. We hoped all was well.

We actually took the opportunity of him apparently feeling better to get out and go to a Rangers game. My firm gave us tickets (we were hoping to take James to a baseball game) and we decided to go even though James couldn't to take a break from the hospital. We went with some friends. The topics of conversation were pleasantly free of cancer. The summer heat felt surprisingly real- somehow it never occurred to me an afternoon game would be hot- and the game was pretty decent.

While I was writing this, James had a seizure. At first when he started moving, we were glad. He was moving again- look, we said, he's up! No more lethargy. He'd been out for hours, even without morphine. Eyes gazing off into space. We joked that his Papa Jim on the phone was helping him. But something wasn't right. The gaze was still there- unfocused, unfixed, dead. We got the nurse. She got another. His pulse lept to 205. The doctor came. He started smacking his lips. More nurses. Ativan. His blood saturation dropped. And I stood helpless in the corner, watching him writhe. Completely unable to do even the smallest thing for my son. I felt like an extra in the worst episode of ER ever. I just watched him, and prayed they'd make it stop.

After about 30 minutes of intermittent seizing, they did. We stood vigil at his bedside for an hour, just to be safe, five nurses, a doctor, Kara and I. We traded hospital gossip, because anything is better than talking about what just happened. James resumed his zombie state. And I still have no idea what happened to the boy in the swing. I have no idea how to get him back. I don't know what to do. In the last few weeks I've wondered a thousand times why this couldn't have happened to me instead of James. I've lived a life. Made my mistakes, sure. More than I care to remember. But I've had normal, good life experiences too. Traveled. Gone to school. Learned to drive. Married Kara. James has never even walked. He can't even sit up anymore.

We'll see neurology tomorrow. I bet we get that 24 hour EEG they were on the fence about before now. I'm frustrated, because I feel like we've been saying seizure for a week and no one listened to me or Kara until our son's pulse hit 200 and he started flailing. I'm angry. More than anything, I'm helpless. I can't do a thing to make him better myself. That makes me much angrier than the rest of it. The most likely cause of the seizures is the tumor, which worries me more than any seizure could. They're talking about moving up his chemo start date. It frightens me that anyone thinks that 4 days could actually make a difference. I feel guilty we went to the game, because I wonder if I missed something- even though I know my mother in law watched James while we were gone. Needless to say, Kara and I are both sleeping at the hospital tonight.

I apologize for ranting. Good things did happen today. But the ledger is just not as even as I'd like. Thank all of you for your support. Knowing that so many people are for James is very comforting. I have to believe that all of this is happening to James for a reason, and the effect he has on other people is a big part of that for me.


  1. I have never met your family, but this blog was sent to me by a friend. I actually have a son who is one week younger than James. I have been following your blog religiously. My husband and I pray for sweet James every night. We are also praying for you and the doctors. I am so sorry to hear that last night was so rough and scary. I pray that today brings only good things.

  2. I am friends with two girls that Kara went to school with, that's how I got here. Also, a friend from TX should be emailing you soon. She was where you are, literally, just a couple months ago. I hope that today is better than yesterday.

  3. Oh my heart just aches for you & sweet James. Hoping for a better day.

  4. So sorry to hear this. We are still praying!

  5. So so sorry to hear about such a scary episode. I can't even imagine how tired, stressed and frazzled you all must feel. It sounds like you have prayers coming from all over the country. Know that James,your family and all the hospital staff caring for your precious baby boy are in my thoughts and prayers several often. My heart especially aches for you when I am holding my 11 month baby boy at bedtime. I am continually inspired by your strength and courage. Thank you for the updates. Hoping for a few "good" days for you all before chemo starts.

  6. Matthew and Kara, I don't have the words to express how our hearts ache for you and your angel. We have been praying for each of you and will continue with all our hearts. Tena Marie and Aunt Vincie

  7. My prayers are with you all right now. I can't even begin to imagine your pain. My son will be a year old on the 22nd, I'm not sure what I would become if something happened to him. You seem so strong through this. I hope that I could have half of your strength at times! Stay strong, God's plans may not be the easiest, but we shall understand one day. God Bless and may he be with you and your family through these difficult times!