Home Sweet Home...or not???

So sitting here in my hospital room ready to take Noah home...or as ready as I will ever be. Doctor called this morning and was confident that Noah could leave today. Last night they again gave him the 60g dose of the new meds and I questioned this for the night before I was told it was switching to 45g. The resident said he was confident he was reading the orders right and wanted Noah to have the 60g. We did but I made it clear that I was not going home on 45g until it has been given to him here for 24 hrs....especially after having a medium size seizure last night. The nurse said she would write this down and totally agreed with me. The doctor called this morning to inform me that he was confident that Noah was ready to go home and I stated my concern for Noah going home on 45 g when he has been only watched on 60g. The doctor stated that we would keep on 60 and do a level blood check in a week. I was okay with this. Nervous but okay. Packed the place up and got Noah ready for discharge. The discharge resident just came in and announced that Noah was going home on 45g and that Dr. Morrison was okay for us to go home...... needless to say she is calling the doctor ....... I will not take my son's life in jeopardy and go home on a new medicine and a new dose that has not been watched to make sure he isnt gonna stop breathing---turn blue----turn gray---- or put his life in jeopardy..... I dont understand how he could think I would do otherwise....
So as of right now my feet are planted and I will not move until Im comfortable with the circumstances.......

As for my car, I called the insurance company this mornign and I have a $250 deductable to fix it. I dont have that amount of money so Im screwed... Mom said Maybe dad can pull out the dents we will see.....

Good day ends in Frustration!!!!

Noah has been doing well today. Acted a little funny but I think he needs to get used to the new meds. Had a couple of small spells but nothing major. Had a nice visit with Erik and the girls It was nice to see them. I miss them alot when Noah and I are here. I cant wait to get home and back to normal surroundings as soon as his siezures are controlled.
Tonight ends in frustrations though because sometime this week my van was hit in the parking lot. No note was left and there is a dent on my passenger side front of my van. Just missed the light but dented regardless. Frustrating.....

The first night of our new journey!

So last night was the first night on the new med. And the first night completely off from the Sabril. Noah slept very well finally. He got up once at 3am and once at 530 sleeping until 8am this morning. He is very sleepy this morning but the doctor said this was to be expected. Im still very nervous coming off from the Sabril. Not knowing what to expect from him and his siezures is the hardest part. So far so good though. Doctor said that he is thinking we will be out of the hospital Friday but I might try for Saturday morning....giving us one more night to make sure of no siezure activity. Last time really scared me and I really want to take precaution. Although....sigh*** sleeping in my own bed would be nice!
Doctor came in this morning and was happy with last night and doesnt want to change anything. So we will see what today brings......

New News

So last night wasnt much better for Noah and myself. I saw very little siezure activity but he didnt sleep very much either. Finally got him to sleep around 3 am and was awake around 430. At 530 he slept for 2 hrs and really hasnt napped much today.
The doctor came around 5pm tonight and thinks that Noah may be having trouble sleeping because its a new environment for him, the wires could be making him itch and he cant tell us, or he could be having a withdrawal from the sabril. He also said that he thinks that some of Noahs movements that we see are not siezures afterall just movements and that some of the seizures that look like his infantile spasms have returned are just siezures and not infantile spasms. Tonight he is taking him completely off from the Sabril and putting him on a new med called Phenobarbital. This med could cause him to be sleepy. So its really hard to decide whether we keep him on a drug to make him blind or a drug that could make him sleepy. But I figured we could try this new one and if it does take this kind of effect on him then we will stop. But its worth trying to save his vision! And Im more comfortable with taking him off and switching while in the hospital and not at home after this spring's episode! It makes it a little less stressful knowing that he is going on something to replace Sabril too.
Tonight they are also giving him some benadryl in hopes that if the cap is keeping him up due to being itchy it will help as well.
So crossing our fingers for sleep and a healthy happy night.....I end my post!
Update tomorrow afternoon!

Update

Doctor came in and said he has not seen any ***BIG*** siezure activity on Noah's EEG yet. Sometimes it takes more than once to see one to understand the brain waves. He has decided that it is okay to decrease the Sabril dosage again tonight. We are again cutting it in half again. This is where the problems began the last time so I am holding my breath, praying many prayers, sick to my stomach, and scared to death. Trying to think positive and will this to work this time. We will see what tomorrow brings. My parents will be visiting around 4-5 tomorrow and I will post an update then.

Hope he sleeps better tonight.......Im exhausted....but I dont know if it much matters how much he sleeps...I may be to nervous to sleep well any way.

Good night all....PLEASE keep the prayers and good wishes coming our way! Thanks for all the support.

Until next time.........................................................................................
Good night! We love you all!

The first night

So the first night was ok here at MMC. Noah didnt sleep very well at all last night. I think it was probally a combination of many things. They are playing with his meds, he is in new surroundings, and he has all these wires glued to his head and doesnt understand what is going on. So far things are going ok with the med changes. He had a small siezure this morning but it was nothing major just the usually siezures he has been having.... as you can see from the picture this morning he was his happy- go- lucky self enjoying all the attention from his nurses and EEG tech. Nothing changes when we go into the hospital he gets spoiled here too. Last night Noah was held by grampa who always makes sure that Noah doesnt go without while we are eatting---Noah got some Chocolate Ice Cream!!! And as usual loved it!

This morning Noah recieved a stuffed dog with a winter hat on its head and scarf. Soft and cuddly. He played with it a little bit...and mommy even got some smiles for the camera

So far so good.....

We are here at MMC. So far everything is going okay. Noah was hooked up at around 4pm to the EEG and the doctor came in and talked with us. We are going to try to take him off the sabril at a slow pace. Tonight we will split the dose in half and see how it goes. Its very scary for me but in the long run it will be better if we can get him off the sabril. Sabril can cause vision loss of the peripheral vision and doctors have stated that Noah ONLY can see peripherally.

So with fingers crossed and a nervous physique we enter the night lowering meds and hoping for the best.....

................................................to be continued