8 stitches

>> Sunday, August 30, 2009


Because I promised to Blog about this, I had to wait a few days to bring the proper perspective. And it's not what you think. I did not need to calm down, I did not need to center myself and open myself up to peace. I needed to be able to not sound so understanding, I needed to actually NOT be able to to see the other side. But it didn't work, I am that person that sees the other side once in a while, when it is important. Boy, was this important.

On Thursday, Bug got on the bus, happily, and went off to school. Glenn was not feeling well, and wanted to sleep it off, but I heard the trash man and made a mad dash to take the trash out, leaving him to attend to Tay and my family that was visiting. While I was outside, the phone rang and I did not hear it. Then my cell phone rang, and I did not hear it because I was talking to the nice neighbor man about backyards. When Glenn's phone rang he missed answering it and immediately checked the voicemail. It's as he was hanging up from listening to the message that I walked in. He said:

That was Dan Petersen, Bug was attacked on the playground and needs stitches.

What?

A million things ran through my mind, but the first was to go get my baby. I didn't care what I looked like, I got my shoes on, called the school from my phone, got no one that knew but told her to tell 'them' I would be there ASAP and when I went to get Glenn, he was on the phone. He was hearing how a little boy jumped on Bug, pushed him to the ground and BIT HIM ON THE LIP. It was bad enough that they were sure he needed a COUPLE of stitches. OMG! My mind raced and Glenn and I left. I pictured my little boy on the ground screaming, all the while, another little boy was sitting on him biting him. It was my worst fear for him. MY VERY WORST. He is a sweet boy and I have watched him, time and again, get pushed away and he just turns and plays somewhere else. He will not defend himself and is not capable of retribution.

I drove. Glenn rode. Only because I got to the car first, and knew where we were going. As I drove I listened to Glenn say things like: Where were they? How did this happen? They weren't watching. I want to know that this boy will be nowhere that Bug is. I want to know that this is not going happen again, I want this boy at home and I want a different staff to take care of him.

I said: Imagine that the phone call you just received said that Bug had just attacked a little boy and that the little boy needed stitches. Imagine YOU are on the other side of that fence. I would be more upset at that than this.

Glenn diverted with other things and we eventually drove the last part in silence.

When we got there, everyone I had met earlier was with our boy. He was sitting on Drew's lap (Drew is his Physical Therapist) and was smiling. His lip was ripped open on his left side, right on the lip line, and was sticking straight out. And yet, he was smiling. This is Bug. He had scratches on his forehead and under his nose. He looked like he had been attacked by a cat.

Jill, his teacher was there, Mrs. Wong, his principal, was there and someone was saying that this little boy has a history of violence. Oh dear heaven. He has done this type of thing before? I watched Bug kiss the towel with the ice pack in it while Glenn tried to ascertain if it went all the way through. Bug didn't have blood on his teeth so we were pretty sure that it was only on the outside. How did that occur is a mystery since it was so bad, but thank heaven for small things. Really, we didn't care, at that time, the details of what happened and the history surrounding it, we wanted to get Bug to the ER. The ER across the street. So Drew carried him out to the car and we drove to the ER in less than 3 minutes.

We got there, signed him in and the Doctor saw him almost immediately. MUCH better than our last ER trip. The Doctor asked if he would sit still long enough to stitch him. We laughed. Not just no. So they gave him Propofol. Yep, the drug that is being widely reported in the media as being to connected to the death of Michael Jackson. Glenn and I both said: Ah, the Michael Jackson drug. The Doctor thought we might be nervous so he started to explain it's properties. I asked him what the mechanism was and he looked at me and said: They think it's a complete central nervous relaxer, or some thing like that. He did say it is an anti-convulsant too. Cool. No seizures were likely. Whew.

They had a hard time finding a vein and he ended up with an IV in his foot. Ouch. he was such a good boy. Hardly cried at all, just expressed his concern a few times and, of course, I was smacked.

In no time at all they began the Propofol and he drifted off. The Doctor said: Let's get started! He injected a local and when the needle hit the lip, Bug woke up pissed. Doctor said: That's the problem, it wears off quickly. I actually said: AH! That explains the constant IV drip MJ was on. He stopped and looked up at me and said: Exactly! Without it, it would wear off too quickly. I guess I was a little too calm and interested. They gave him more Propofol and we saw his O2 levels going down a bit and I heard: He's going down, he's crashing a little. That's when I got nervous and had to walk away from the gurney. I was still in the room but a little further away. His levels came back up quickly and the Doctor started to stitch...and Bug woke up pissed. Every time that needle went in, Bug would wake up and cry a little. More Propofol and more local. Turns out that Bug needed an adult dose.

The Doctor did an excellent job with the stitches. The edges were clean, not jagged at all and it closed beautifully. I commented as much. The Doctor thanked me and said: we got lucky. Boy did we.

Bug was up and out and about less than 15 minutes after the stitches were finalized. He was a little trooper and everyone said so. EVERYONE there fell in love with him. It was typical Bug.

He is doing well, and the injury seems to not have effected him at all. Although he DID point at his lip last night as he was cuddling with me. I told him: Did you get and owie? He looked at me and then leaned into me. All that trauma, and he still is a sweetheart.

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What a morning!

>> Tuesday, August 25, 2009

Bad me, need to post his first day of school pictures but...

August 23rd
He went three whole nights with no events and then began to cluster. He would sleep, then seize, then sleep, then seize. After 5 events in 30 minutes I gave him the Diastat. He slept well and went to school happy. Mrs. Downs said he was a little withdrawn but interacted more in the classroom than the playhouse. This is good.

Last night, he started to do it again. I did NOT want to give him another Diastat. So I gave him A LOT more Keppra and he had one more and then was done. I will call Shari and tell her about this. It's good and it's not so we will have to see.

BUT..the great part of the morning: Bug has been waking up completely dry for a while now. I haven't managed to get him to the potty before he wets until today. And even better than that, he motioned at his crotch. So, I ran him to the bathroom. He sat on the potty for a bit, tightened his tummy and then...he peed. He peed well. He got some on me and the floor, but that's little boys for ya, and he didn't stop for quite a while. I was so happy I did the potty dance. I used to do it for Tay, now I did it for Bug. It made him laugh and I like it when he laughs.

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Valium knight

>> Monday, August 17, 2009

Haven't been updating, everyone was sick, again. Bug did well, even though he was snotty and miserable. He had at least one event every night for a week and then went 4 night after I modified his medication. I began giving him 100mg Lamictal in the AM, 5ml of Keppra, followed it up with 200mg of Lamictal and 7ml of Keppra. Seemed to be working well until last night.

He took a 3 hour nap on Saturday, which is odd and says: be ready for a change. Sure enough, weird seizures last night one after another. Between 10:30 and 12:00am he had 6. I gave him his meds a little late so I wanted to give them time to kick in, when they didn't I gave him Diastat.

He was so jittery and angry after these events. He was constantly slapping himself until he fell asleep, then he would have one and cry. It was the worst. The Diastat brought him some relief but I hate how frequently we are having to administer it. Need to call Shari and see what we can do.

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Long night, bad morning

>> Wednesday, August 5, 2009

Got stuck up at Mom's for the night, I ate something that really hated me. Bug and Tay had played REALLY hard at the McDonalds and I figured they would crash early. At 8:30pm, they were bouncing off the walls so at 9:00 Mom and I turned off the lights and the TV and they were asleep within 10 minutes.

I,however, listened for the inevitable. It didn't come before I fell asleep at 10. I awoke at 12:03 because Bug climbed in bed with me. He tossed and turned and sat up and just couldn't get all the wiggles out. He woke me up at 1:20, at 2:30, 3:00 and 3:30. Then at 4:00 he had his first 15 second T/C. He immeidately fell back a sleep. At 4:30, 5:00, 5:25 and 6:00 he had small events. After the last one, he decided to be awake. I say he decided because I watched him fight it.

He crawled on me and hugged me and tried to play with my glasses. He walked around the room and then layed down, then, he would start to nod off and jump back up. After 25 minutes I gave in and got up with him. It was a rough night. A really rough night, but he is happy and playful and doesn't show any signs of being sleep deprived. I wish I was the same.

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Numb

>> Monday, August 3, 2009

I wonder when I will hit that point where I am numb to his feces eating, wiping, playing and just see the child that does not have the ability to control it. When will I look at that mess and just sigh and put him in the shower? Because I still cry. I still look at him and cringe with disgust when I see that all over his face. I picture him at 15 doing the same thing, and then, I can't do anything about it if he won't let me clean him. Right now, I have to FORCE him into the shower. He will sit in it for hours, gleefully dipping his hand in when the paint material wears off. Chirping his delight that he is happy and playing with something that he made. When will I stop crying?

I took it upon myself to up his dosage of Keppra. It's not insane since he is still on a really low dose. He got 5ml in the morning and 5ml at night. He only had one at 7am so I think he is still burning through it too quickly. I will call Shari in a few days once we get a consistent dosage build up and see where he is. Sigh. Again. Sigh.

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August 1, 2009

>> Saturday, August 1, 2009

I managed to get Bug his medications at 9:00pm, and half hour later he was asleep. I thought he was doing well, until 10:45 when he had a 15 seconds T/C. He fell back asleep and slept soundly, until 4:20am when he awoke for the day.

Or so HE thought.

Glenn and I were not having it. I took away all his toys, forced him to lay down and gave him a Unisom. One. I may not have needed to because after hiding the toys, he was quiet immediately and asleep in half an hour. There really is 'something' and by something I mean, hair pulling, nail grating, what is that noise? annoying about that motor boat sound at 4:30 in the morning. And while motor boat sounds is a very good thing from a speech standpoint...he was lucky.

We thought he was gonna have more seizures after that. Being up and running around like that at 4:00 am is a sure sign that his brain is hyper and he did. Two more, each about 15 seconds and he recovered quickly. Went back to sleep. He awoke at 8:15 smiling.

At the moment, he hates everything. I think he is still tired from the Unisom but he is sick again so who knows? I just hope he stops slapping me for no reason.

Lamictal AM 125mg
Keppra AM 4ml

Lamictal PM 175mg
Keppra PM 4ml

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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