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Wednesday, December 15, 2010

Some thoughts while I am "not allowed" to sleep.

So actually I am allowed to sleep now. I finally told myself, it would be terrible to no sleep. Since Kadyn needs me to be a reliable awake driver, the best for the both of us would be to get some sleep while Kadyn is asleep. I dozed off a few times and the nurse had come into wake me, and I just told her that I know that I am suppose to stay awake but I know when he is going to have a seizure hours before he even has it. I just get that feeling. I also know everytime he moves in bed I hear it. I also told her that I need to sleep in order to stay awake for the 20 minute drive home tomorrow. I told her that I have already mentioned this to the doctor. She asked how am I to record what he was doing. (really a face-palm moment here) If he is sleeping, it's not hard to figure it out. Although I told her that he is no going to have a seizure today, but he was going to be up most the night annoyed and cranky. Yeah and I was right. Kadyn is annoyed. He does not like being trapped in a bed the whole time. He wants out, he wants to roll around and be himself. He doesn't want to be in there. He doesn't like how cold the room is and mot importantly he does not like the head wrap or the chin strap that the doctor put on him with gauze. The I put on his head now because he kept choking himself with it. My head is pounding because my nerves are shot. I ahve listened to Kadyn's cries and whines for about 4 hours now. It's starting to get to me because it's not fair. I wish I could just take him home. Nothing I do or say to him calms him. He is tired now. SO he is extra irritated. Nurses don't care, they won't even bring me a chair so I can cuddle with him in it by the camera. It's just horrible on this floor. They don't even check on these patients. I think the whole time I have been here I have seen a nurse 2 times. I am sorry but I think the seizure patients should get some more attention than this. I WILL be talking to someone about this.

Also I talked to some pharmacisists and did a lot of research on the medication Kadyn has been on. All but 2 medications are NOT for infants/toddlers.

Keppra NOT for Children under 6 Kadyn was 1.5 when he went on it
Zonegran NOT for Children under 16 years Kadyn was obviously not 16!
Trileptal NOT for Children under 4.
Lamicatal was safe but it needs another medication to go along with it that is not safe for children in order for it to work
Phenobarb infant/toddler safe.

So why was my child on these medications? Come to find out these medications were probably the reason Kadyn was having so many seizures. Then as I think about it, I never saw Kadyn's first seizure. They just threw him on medication because they assumed Kadyn had a seizure which is what got us in this overnight EEG mess anyways. Obviously doctors don't listen when you tell them no, that is his nystagmus not a seizure. I am just a frustrated mama and the gloves are off. December 23rds appointment is going to be an all out brawl. Why are doctors so quick to perscribe medication. After 2 medications fail the chance of another seizure medication working is slim to none. So why did we go so long without the Ketogenic diet? Why did we go so long without being given any other options. Why did they drug my child up on so many medications that made him like a vegetable? Why wasn't something done quicker when they noticed Kadyn's seizures were not stopping no matter what. Not to mention Kadyn was on near toxic dosages of medication. I have many unanswered questions that are going to be answered at our appointment. If we see a neurologist tomorrow, I may cause a war tomorrow, or I'll just wait. I don't want to cause any stress to the children here because I am causing chaos.

Now I am calm. Kadyn is yelling every 5 minutes. Just a yell, I think he is playing, but he has been calm that I don't want to get up, have him see me and him get upset. We are watching Happy Feet, well I am watching and he is listening. I love this movie. I don't care what anyone says :)

So Harvey returns in March. I think my nerves and my stress level will calm down 85%. It's hard being a "single" mom. It's hard raising Kadyn on my own with no help. I never realized how thankful I should be for Harvey's help than now. I don't even think I am looking forward to Harvey being home to be together again, I am looking forward to the help! (haha) I already told him that when he gets home I am throwing him and Kadyn out to his grandmas and I am sleeping for a full week. Kadyn's sleep habits are so bad, but there isn't anything I can do to change it because we Kadyn is asleep he is out and doesn't wake up no matter what. I tried the whole making him not nap thing, he just naps anyways and I can't wake him. Everything is on his terms. Which its ok I guess. As long as he is back to sleep after Alexa gets there. :) because she sleeps and so do I. It's nice really because Alexa wakes up, eats and back to sleep she goes. So I feed her and go back to sleep because Kadyn will still be asleep. It's nice. It's broken but better than nothing.

Right now I am pretty excited about breakfast :). I am super excited about it haha! I am able to order it and have my meal sent up instead of having to go downstairs. Hopefully tomorrow we get out of here early enough so I can go home and finish putting laundry away and clean my room more. I need to do something with it because I have no room. I think I am going to put either mine or Kadyn's dresser in the Tv Room. Maybe my mom will let me get away with sneeking that in there haha:)

Well, I think I am done rambeling. I am hoping Kadyn goes to sleep soon. I just change his diaper and talked to him about sleep. I think he almost listened :).


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Anonymous said...

The person you spoke to was a pharmacist.** Before you start insulting everyone in the medical field with your blanket statements, for a hint of credibility please run your blog through a spell checker. The reason a lot of medications are not FDA approved for pediatrics <6 and so on, is because the studies/clinical trials have not been done in that particular population. Doctors on the other hand, are using their clinical experience when they prescribe those medications. They have seen those medications work effectively and safely in the past on younger patients. They are putting their license on the line to do what they think will work best for your child.