>> Tuesday, July 14, 2009

Sunday, July 12 - Monday, July 13, 2009

It all started with Bug not wanting, or not able to, go to sleep. At 10:30pm we pulled into the garage and it appeared Bug was tired. It appeared that way until he got out of the car. He was hyper but not running around. He would lay down and then get up. He would spin whatever he could find (glad we no longer have the cats). I gave him a Unisom once I recognized he could not shut down. And I waited for him to drift to sleep. It didn't happen.

At 2:30am I took him into the family room and watched TV, making him lay on the couch, this pissed him off in a BIG way. He was slapping his thighs and screaming at me. I would try to calm him down and whenever I got close, he would pull my hair. Something was going on. It brought back a very vivid memory of another night a long time ago.

When he was 4 months old, he had a full 24 hours with no sleep. Anytime I laid him down he would scream and scream like we had never heard before. He had no fever. He was still breastfed and I hadn't eaten anything abnormal or out of the ordinary. He just COULD NOT shut down. If I even tried to sit down, he wailed. Not even to feed him, he would not have it. I had to breastfeed while walking, and that takes skill. I had to walk, to pace back and forth and around the kitchen island and I cried. I remember it vividly. As I walked, he would look at my face and smile at me. I could not garner my standard: Stop smiling and go to sleep, I was too tired. I tried to wake Glenn but he would sit up and then fall over. So, I walked alone, and I cried I was so frustrated.

Nothing would help him. Glenn got up once about 3am and said: Just put him down. I looked at him, most women KNOW this look, it's the 'YOU are an idiot, of course I tried that, do you think I LIKE walking at 3am? Do you THINK I am SO NEW at this that that thought never occurred to me? Why did I procreate with you? When are you gonna die?'. But I didn't say that. What I did was look at Glenn and placed Bug down on the couch. The noise that came from the kid sounded like he was being tortured. And I sat down on the opposite couch.

Glenn and I watched him, and listened to him flail and wail. Glenn looked at me every so often. I closed my eyes and tried not to lose it. After a lifetime of about 6 minutes, Glenn said: Has he been doing this all the time?

This time I did say: No, Glenn he started doing this as soon as you got up. I just wanted to hold him all night and he got used it.

Glenn started to get a little mad at my response but all I heard was the baby screaming and I went to pick him up. Glenn got to him first. He held him while he sat. Bug still screamed. He tried to calm him, which usually worked, but not this time. Glenn reluctantly stood up and as soon as he took ONE step, Bug calmed down. Glenn looked at me like: See? He's calm. He walked around the island and then sat back down. Bug began to scream as soon as Glenn stopped to sit. I gave him the look like: Uh huh, didn't I SAY that. So I went to our bedroom for a break.

He was quiet for a bit and I began to nod off. Then as quickly as he stopped he began again. I thought: Glenn is a dead man, and then I heard the toilet flush. Oh. But the screaming continued. After 20 minutes I went downstairs.

Glenn said: I got this, it's my turn.
I said: Thanks, but do you think I can sleep through this?
Glenn: You can hear him?

I said nothing. Mommy hearing is stellar of course but in our family, it's legendary.

Glenn said: Well try to get some sleep.

I said: That's like saying, don't breathe and let's see how that works out.

We both sat there while he screamed and I picked him up after a few minutes. He calmed down immediately, Glenn got me a drink and then went to bed. We had arranged that he would spell me in 2 hours. 4 hours later the sun was up and I was still walking with my baby. Two days later, he started to refuse breast milk. It was THE longest 24 I had ever had.

Until Monday July 13th, 2009.

At 2:30am I gave him another Unisom. Usually, he will be asleep in less than an hour but this was not a normal night. At 4:00am he FINALLY fell asleep. I wasn't relieved. I was terrified. And I was right to be. At 4:07 he began to seize. He began to seize like I had not seen him seize in over 2 years. I leaned over and tried to console him. I watched him begin to turn blue. The expletives that escaped my mouth at that point, would pale a truck driving navy seal. I was devastated. I picked him up, rigid and seizing and took him to our bedroom.

Glenn! Bug is having a 3 minute Grand Mal. Glenn got up and said: What?

I said: Over 3 minutes and laid him down.

Glenn and I both watched him begin to rhythmically contract and we knew he was coming out of it. His eyes rolled into the back of his head. His arms began to reach for me, he pulled his legs up toward his chest. I held him. I kissed him. I prayed this was the only one. My prayers where not answered the rest of that night, or the next day. After the first one, I got the Diastat.

I laid down next to him and held him, trying not to cry. At 5am I fell asleep, listening to Glenn snore. At 5:15 he had another. Glenn and I leaned over him. I said: Diastat? Glenn said: Probably. I got it ready and then didn't give it to him. We were less than 2 hours from his regular wake up time. Maybe he would wake up and they would stop. So I held off.

At 6:30 he had another, I thought I had made bad call. I was crushed. He stopped and went back to sleep. At 7:45, I was awakened when he had another. This time, I did cry and I tried to keep him awake. But he slept. At 8, Glenn went to work and told me to call him if he was acting strangely when he awoke. I agreed and at 8:45 he had another. This time I was able to keep him awake.

He barely ate breakfast, and I was barely functioning. I gave him 125mg Lamictal at 11:30 and he went into my bedroom and fell asleep. I cursed as I watched him. At 11:45, he had another. I got the Diastat and told myself: I will give it to him. He slept until 1, when he had another much milder one. Less than 30 seconds. At 2:30 he had another mild one. I thought he was getting over the cluster and began to breathe easier. I was so wrong. At 3:45 he had another Grand Mal over 3 minutes. I got the phone number for his Doctor. At 4:55 he had the worst one yet, I called Glenn, close to tears. I told him I was taking him to Primary Children's ER and we are gonna get some tests done. Glenn agreed we needed to do something. These were so intense and something had changed. In a bad way. I called Dr. Van Orman at 5:02 and the office was closed.

I waited to talk to the on-call Neurologist. She agreed we should bring him in immediately. That it sounded like something had changed and we needed tests. I waited for Glenn and we went to the ER.

2 hours later, we were sitting in the exam room and Bug was happy as ever. The resident came in, we told her his story, beginning to present, and she said: I can't even imagine what it is like. I said: I hope you never do. I also told her that I will not watch my boy slip away from us again. That NOW was the time to be aggressive with tests, that I wanted a spinal tap, a CBC, an EEG, MRI, everything. She agreed about some of it, but still, no spinal tap. She did a physical exam and it was apparent that he had no deficits. He was walking fine, he was smiling. She was amazed he was doing so well.

An hour after that, another Doctor came in and told us that she had consulted with the Neurologist and read through Van Orman's records. She told us we would be adding Keppra to his routine. She also asked us if we would want to be part of a study for emergency AED's since he had NOT had the Diastat. We said sure. And asked about Keppra, what was the mechanism? What were the side effects? She smiled and said: Dunno, I'll send the pharmacist over. And she did.

30 minutes later we were talking to the Pharmacist and reading through literature. 30 minutes after that we were being admitted. Bug was spending the night...


Amber July 16, 2009 at 12:19 PM  

You/Bug/Glenn were going through this nightmarish hell and still had time to wish me a happy birthday--- you're incredible!

You and Glenn are amazing for Bug; just like the nurse said, I can't even imagine how you feel and I wish I could take away your pain and anxiety for him, but you're his mommy and I know that's never going to happen.

We love you guys so much and as soon as you have new news post it or get Gma to call.

Nett July 16, 2009 at 4:48 PM  

Thanks honey. It's days like this that we cling to anything normal, anything that reminds us that this is not all there is to his life, to our lives. It's good to see the world around us and admire the beauty in spite of the misery. Bug loves life, he enjoys himself every moment of everyday and we need to be that way too.

We will be up at the old farts' tonight, we will try to call later or tomorrow. Love you!

Megan July 17, 2009 at 10:59 AM  

Oh, Nett. <3 I'm at a loss for words. I hope they can find something soon.

Karen July 17, 2009 at 1:11 PM  

I just read the post. Oh honey I wish with all my heart that I could be there to hug and hold you and your precious loved ones! You and Glenn were chosen by the Lord to be his parents. He knew that you guys could give him want he needs. I love you very much. I need to go wipe my tears now. We will see you in August!!

Nett July 19, 2009 at 10:37 PM  

Thanks, got me crying too. I need to update it's just been insane. Bug is adjusting to new meds and it's been interesting. Has an EEG and follow up doc appointment tomorrow. He has been seizure free since then. Fingers crossed! Can't wait to see you in August! I need the kiddos to have an Aunt Karen moment and a Megan fix, course a Jared Golf run would feel pretty darn fabulous too. Love you!

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