Enough is enough

We were finally able to end our EEG today!

I made a post on my personal facebook and instagram last night. We had a rough night in the Rudness household. For anyone who doesn't have me on those sites- this was my post last night

"Tay-sachs reality again tonight. It's currently 12:50am. I'm sitting in Greyson's room in the recliner listening to his rattley breathing, trying to give him a little break from suctioning since we've been suctioning since 11:30. I told Adam Rudness to go to bed and that I would handle it so he can get some sleep.

Our "new" suction machine sounds like a MF lawn mower. It's so loud and poor kid knows what's coming and clenches his teeth. But we need to suction to help him from choking/aspirating on his saliva. We have been using these deep suctioning catheters to get down his throat near his vocal cords and suction to help get the gunk out for him, because his body has failed him and he can't cough or clear his throat like you or I would.

He's currently hooked up to a pulse oximeter and has electrodes covering his head and two on his chest. The EEG is measuring his brain waves to check on seizure activity to make sure he's not having new kinds and that his current medication and dosages are correct for the seizures he is having. This EEG is 72hours long and comes with a camera that needs to be pointed on him and a laptop that needs to remain open the entire time. His head is covered in a bandage and has a long tail attached to the machine for the electrodes. We are hoping this study will help get Grey approved for epidiolex. Epidiolex is an FDA approved CBD for seizure treatments. We are hoping it will allow us to reduce the amount of seizure meds that will be added to his routine as the disease progresses and possibly lower the dosage he's currently taking. They make him so sleepy so we are hoping it will allow him to be more awake and alert during the day.

I just gave him his last round of medication for the day and he's getting a feed through his gtube. Another thing his body failed him at.. eating by mouth. This disease has robbed Greyson of everything. His muscle tone, his body, his muscles, his ability to play, laugh, smile, and move. We never got to see our son crawl. Or video tape his first steps. We only got to hear his sweet "Mama" and "Dada" a few times.

This week has sucked royally. I don't think I've ever been more thankful for Friday. I don't have much left in me. No one said life would be fair, but damnit this is just beyond unfair."

It was hard sitting his room last night. I got so emotional thinking that this is his life. This is happening to my son. Yes, this is hard for Adam and I - and our families, but this is my son's life. He is trapped in this body that has failed him. After suctioning for over an hour and a half, I finally cleared his throat and the rattling stopped. It was such a huge relief. After that I started his feed and hung out in his room until it was done to make sure he was ok. I ended up falling asleep in his glider until the food was done and the alarm woke me up. I unhooked him and stayed in his room for a little longer to make sure he was ok and safe before heading to bed. I finally climbed in MY OWN BED (first time since Sunday..) and fell asleep until Adam's phone rang at 5:50am and woke us up. It was the company conducting the EEG. The battery died on Greyson's electrodes and he would either help us change it or they would just end the study. We were both honestly done so we said just end it now. I wasn't about to go wake Greyson up to change the dang batteries. We let Grey sleep in and he woke up shortly after 1:15. We took his ppod upstairs and removed the electrodes from his sweet little head. They were entangled in his hair and the glue was so globby. Grey doesn't really whine or cry anymore and he was just whimpering. The electrodes left welts on his bare skin. We gave him a nice warm bath after and I had a washcloth on his head to try and loosen up the glue that was left over before I washed his hair. I had to gently clean his hair, he has little wounds all over his head. Adam and I both got emotional taking the electrodes off and decided we are done doing EEGs. He does not need to go through this again. This is his 3rd EEG in his 2 years of life. The 1st one wasn't bad, it wasn't very long. The 2nd one was 48 hours. This past one was 72hours. After his bath, he was so hungry so we hooked him up for lunch and we snuggled. Our day was mostly snuggling and it was so necessary for all 3 of us.

This was all the electrodes under his bandage.

This was after we took all those wires and electrodes off. The white bloches are the glue and the red on his skin are the welts they left behind.

Poor kiddo- you can see in that first photo he was in pain. It was so hard for Adam and I to take them off knowing he was in pain but they need to come off otherwise it would get worse. We worked quickly but carefully. The bath helped get all the glue off but now he is left with the red welts on his skin. Talk about feeling terrible. We are done with putting him through EEGs.

He is currently sleeping on his Dada while I write this. Here is to a better night tonight and a better week coming up.

xoxo,

Kim