Life in the hospital....

Hospital Adventures

 My luxurious bed for 5 of the 7 nights

 Even the call light/remote got a mustache :)

 Not gona get out of homework

The rock star at PET scan

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This is a picture I took with the Ipad

This is why I barely slept most nights.

I don't know exactly what to watch for, not like it matters.

Being able to watch this 24hrs a day for 7days was....

good and bad

It was a long stay, but we tried to make the best of it

PET Scan n' stuff- in the hospital

Well after a long night and one IV infiltrate. He is at PET scan. 

Saw lots of Doc's today and it's only noon.

 His neurologist came by, I just love her, and said they saw some of the same "abnormal activity" on the EEG they have seen before.

 It doesn't give a good picture of exactly where the seizures are coming from.

 That's why she believes the seizures are coming from deeper in the brain. 

Hopefully the PET scan will see where the seizures are originating from. 

 The way it was explained to me, the PET scan, takes pictures of the brain in slices.

 So you can really see inside the brain piece by piece. They inject a radioactive glucose solution via IV that travels to the brain. The neuro said that it is thought that the area of the brain that has seizures doesn't metabolize glucose ie sugar that way it is suppose to. So on the scan if there is an area of the brain that is not metabolizing glucose it will show up dark in the picture

 Interesting, I think....but I'm a science dork.

 The one thing she brought up that I didn't like?

 Tapering the Keppra to maybe catch seizures on EEG.

 Meaning that, tonight's dose will be cut in half and tomorrow his Keppra will be no longer. 

Yeah..... I'm still sick to my stomach.

 As other parents of epileptics probably understand, the idea of this is so scary.

 I understand why they want to do this from a medical standpoint, but as a parent it sends my nerves into over drive. 

 What brought Keppra into play in our lives was a summer of Grand Mal seizures. 

He had quite a few and his other medications seemed to just be making it worse. I stomped my feet, got him admitted and they loaded him with Keppra. He obviously has still had seizures since then, but no more Grand Mals. 

 So of course my fear is that this will bring those awful things back. I'm sick with fear. 

It doesn't matter that we will be in the hospital if something happens. They are awful to watch, just awful. They suck so much from Arthur. 

The best way I can describe it is this......

 I watch the Grand Mal monster drain the light from my child's eyes and as quick as he does that, he drains the life out of his body. I loose my son for hours each time. I don't see a lot of sleep in my future

Just a vent

I love the current neurologist. She's friendly, pro-active, and I can email her with my concerns.

AND....

She responds very quickly.

You just can't beat that.

The upcoming hospitalization is weighing on my mind, a lot.

I'm so glad that he will get an extensive EEG, MRI and PET scan. Finally we can truly determine where these seizures are coming from. You would think these tests would be automatic when someone is diagnosed.

I saw this statement on a website and I fully agree

Accurate localization of the focus of the seizure activity is critically important to determine treatment options.

I guess what is getting to me is that.... The Neuro mentioned surgery in our last appointment.

The email I got about Arthur's upcoming hospital stay said he was having

a PET scan and MRI because it's part of the pre-surgical work up.

There's that word again

SURGERY

I know surgery can not be forced on us. But it really freaks me out. To me, surgery is the LAST option.

Cutting into my child's head and taking out a piece or two....

is LAST on my list of treatment options

I've read plenty of stories of people who have had success and some who haven't.

I know that once your on AED #3 and up, the chances of the meds controlling the seizures

are pretty slim. I'm fully aware. But, that doesn't make me want to jump right to brain surgery.

UGH

On an even happier note....what if there's something wrong with his brain? 

What if some damage was done

when he was in the hospital as an infant, when he had open heart surgery?

What if there is a tumor in there and that's what has been causing the seizures?

What if?

It makes my heart hurt, makes me sick to my stomach.