We're home

and doing well :) Jayden was discharged yesterday afternoon with a new medication added to his current two, in order to help decrease his seizure activity. The attending neurologist (who was awesome BTW) told us that he did need to have an additional medication added immediately and then it could be changed if needed once his new neurologist runs any tests she needs to have in order to get him on the correct medications and the best dosage. We also have to bring him back sometime this week for another EEG, more than likely a video EEG. He's been compfrtable at home for the most part, although he does have little moments where he looks like he thinks he's about to have a seizure so he just wants to lay down. I'm pretty sure he's still having some activity, but it is not as bad as last week. Last week was pretty awful. He would scream and cry for help for 6 or more hours. And during this time, he could not eat so he was very miserable and so were we.

When we got home yesterday, Jayden was pretty out of it b/c the new medication makes him very drowsy, but when he saw that Santa came, he ran over to his gifts which included lots of learning toys, some action figures, legos, a board game, a powerwheel, and a new Spiderman Helmet. We expected him to run straight to the powerwheel and not care about anything else but we were SO WRONG! He did run up to the powerwheel, but only to grab his spiderman helmet and beg for us to open it. He refused to open anything else until the helmet was free from the packaging and strapped on to his head. Then he continued with ripping his gifts open. Classic Jayden :)

Merry Christmas

from the hospital :(

Jayden continued to have seizures throughout the day yesterday and was extremely miserable. We had to use his rescue medication on Thursday to stop seizures but they started again 2 hours later. Yesterday evening we decided to bring him in to the ER to see if they could stop the seizures. Well the seizures stopped on their own by the time we were called back, but Jayden was still very wobbly and uncoordinated so they decided to admit him and try to get him stable until his appointment on January 4. They started a new medication and he did well through the night and was doing great this morning. He even had the cutest surprise visit from Santa. The Dr examined him and was happy with his progress. She wanted to order an EEG but the soonest it can be done will be Monday. She decided that instead of keeping him here until Monday, she'd let us take him home so we can enjoy the rest of Christmas at home. We would have had to bring him back on Monday for the EEG and we were fine with that. Just as they were finishing up his discharge papers, he had a seizure. The Drs came in and tried to wake him (he immediately fell into a deep sleep), but he wasn't responding, not even to pain. So they paged the neurologist and she ordered more IV meds and monitoring. He will be re evaluated at in 3 hours. Right now he is resting. It's bittersweet. We were THIS close to heading home. However, I would have been very upset if he would have been discharged only to get home and start seizing again. He's where he needs to be right now and the hospital staff has made sure that his Christmas is just as enjoyable here as it would have been at home! So far Santa has brought him a Handy Manny cell phone, Mr. Potato Head, a musical train (with tracks!), and Candyland! What's funny is that these are ALL his favorites!! Funny how Santa got that all right huh? Thank you Lord. I know you are listening.

Double Edged Sword

Yesterday evening, I rec'd a call from the nurse practitioner that Jayden was supposed to see. Unfortunately, we had to cancel the appointment b/c Tricare wouldn't approve the office visit or any tests that she ordered since he was not an established patient with any of the affiliated Drs. The medical insurance obstacles. Well, she wanted to see if there was any way that she could help over the phone, as she had heard about Jayden having complications and no neurologist to turn to for help. She asked for some detail and thought really hard on how she could help and what else I could do to get him through until January 4. Unfortunately, the Dr that he's going to be seeing is out of town and won't return until January 4, so that's why he cannot be "worked in" on her schedule, however, the NP told me that she'd make some calls to see if he can possibly get in to see one of the partner Drs prior to the appointment on the 4th. She said "No promises", but I'm truly not asking for promises, just for someone to show some concern for my son and to actually help us. And she's doing just that.

We talked for about 20 minutes and after giving her a brief history along with the current medications and dosages, we both came to one(possible) conclusion: The Trileptal could be causing the seizures to get worse due to the extremely high dose he's on since it's being used as the sole seizure medication right now. I always wondered if that was the case b/c there have been multiple occasions when Jayden would have seizures immediately after taking his medicine. I do not plan to stop this medication without first seeing the new Dr (neither did the NP encourage me to stop it) because I know that could very well make matters worse.

Today has been a pretty bad day for him today. He was having seizures this morning so I put him in bed for a nap to see if that would help. He only slept for an hour (he usually sleeps 3-4) and he came downstairs and immediately started having the seizures again. He's very uncomfortable right now and I'm just hoping we can avoid the ER tonight...

We'll be home for Christmas...

And probably miserable :(

Jayden tested positive for the flu this morning...We had to skip the flu shot for him this year b/c his seizures were not controlled. I have no idea why things are so bad for him right now. Why can't he catch a break. It just seems like a nightmare that I cannot wake up from. He's still having seizures everyday and b/c of that, the Dr decided that it was best for him not to take the Tamiflu b/c it does have seizures as a side effect. She warned us that his seizures will increase b/c his immune system is fighting off the flu. So that will mean multiple seizures a day. My poor baby. We have to keep a close eye on his temperature and just try to keep him comfortable, but otherwise it has to run it's course.

A wonderful day =)

While his seizure activity is still extremely high (he's had 7 in the past 3 days and we ended up in the ER again on Friday night), today he has been seizure free and behaving so well!

This morning, I noticed a spark in his eyes. Life in his face. I kept looking at him trying to figure out what about him looked so different, but the only thing it was was that his face was suddenly filled with life. Filled with life as opposed to having a drugged out look. Sad, sleepy eyes and cheeks hanging low. Zero life in his eyes. Today, I saw a face that I haven't seen since his birthday and birthday party on Dec 4. I didn't realize it until I saw it today. And his little personality just shined today. He helped to clean up. He took directions so well. He understood and comprehended things that we didn't think he'd known well before this seizure activity started. Everything he said today, it was said in sentence form. No babbling or screaming while playing with his toys. Instead, he was repeating every thing that his talking Spiderman toy would say. We also caught him singing a song from Polar Express. Once he noticed us watching and smiling, he got bashful though :) We also were brave enough to take him out to Target knowing full well that all of this could change in a brief second right in Target's parking lot. But he walked into Target and got into the basket and sat there like a big boy. He's usually one to ask for every thing in sight and I had to stop at the video game section to grab a game for my nephews for Christmas. To get there, we had to pass the dreaded toy section. Jayden looked on very quietly, and even when we passed up the huge Toy Story shelves, he never screamed "I want that! I want that! I want that!" I seriously looked at Mike and said, "Wow, I'm impressed!" It's as if he knows Christmas is next week. LOL. We got into the checkout line and he saw his favorite piece of candy and he said "Mommy, I want this." He'd been so good in the store so I told him he could get it and he actually put it on the counter so the cashier could ring it up. Normally he pitches a fit if anything leaves his hands to be rang up. She rang it up and gave it back to him and he said "Thank you. Merry Christmas." WOW! I couldn't wipe the smile from my face. I was so proud. All evening, he's been soooo good. He even ate all of his dinner.

He hasn't gone to bed for the night yet, so I do know that this perfect day could take a turn at any unpredictable minute. But for now, I'm logging off so I can go look into those beautiful, sparkly eyes of his before he goes to bed for the night. I want to soak it all in because days like this have not been happening often around here! Thank you to all of my blog readers who have been sending prayers, advice, links, etc. I appreciate it all :)

ETA: I do feel that this is just proof that Jayden is definitely capable of doing well, behaving well, and learning well. The last neurologist told us that she thinks that the bad behaviors and learning issues are just "who he is". I disagree and feel that they are directly related to his seizures b/c when they were controlled, he was ok. Today was that ray of sunshine that tells me that he will be okay.

Always without warning...

We needed to run out to Sears tonight to price some ranges for the kitchen at our property in Jackson. We made sure that Jayden had his bath, dinner, and medication prior to leaving in hopes of avoiding a seizure b/c he hadn't had one all day and we still haven't verged off of this daily seizure road just yet. He was in a good mood. Talking on the phone to Santa and running about singing songs. We got in the truck and he put himself into his carseat. A song came on the radio that both he and I like so we started singing that. When we pulled up to Sears and Mike turned off the truck (causing the song to stop), Jayden told him "turn it on!". When the song went off, we all proceeded to get out of the truck. Jayden climbed out of his seat and walked over to the door so I could get him out of the truck. As soon as he jumped down, he was begging me to hold him. I thought he was just being a little lazy and just wanted to be carried so I joked with him and said "You are half my size. Why don't you hold me?" He kept insisting "Hold me Hold me Hold me!" I didn't pick him up (which is now breaking my heart) so he turned to his daddy and pleaded for him to hold him. Mike held his hand and we continued to walk through the parking lot. Jayden was whining so I reminded him that Santa is watching. Jayden shouted back at me "No!" I asked, "So you don't want Santa to bring you any toys?" He shouted "No!" I said, "Well that's not nice of you so you need to stop shouting at mommy ok?" and he said "Yes ma'am" By this time we were in the store and he just kept whining. I reminded him that we were stopping for ice cream after the store so he needed to behave. Then he looked up at me with the saddest eyes, filled with tears, and said "Mommy, I scared!" This is always our clue that he's about to have a seizure so I immediately picked him up and tried to help him to slow his breathing b/c hyperventilating can bring on a seizure. He relaxed for a minute but then the seizures started, right there in the appliance section of Sears. The associate gave me a seat and I had to take off Jayden's jacket and his shirt right there in the store b/c he overheats when he has the seizures. He screamed and grabbed at the back of his head and yelled "Mommy!!" It was awful. We couldn't leave until the seizure was over, so I sat there consoling Jayden and my husband was able to get help from the associate (while taking several breaks to come check on Jayden). The associate offered a glass of water b/c when the seizures stopped Jayden was pale and sweaty. Unfortunately, he never became alert enough to even drink the water. We did get him to answer some questions though and to tell us his name, so he was conscious. We carried him out to the truck and put him in his seat and he said "Mommy? I sleepy." I told him he could go to sleep and he sure did. It was his bedtime when we got home so I decided not to arouse him and just tuck him in. He was awake by then, but very very groggy, and he was able to help me take his clothes off. He told me goodnight and I love you. As always, the monitor is on in his room.

This is our life. It can go from being a very good day to being a horrible day in a split second :(

MRI and new neurologist

Jayden had his MRI done this morning and this time they used contrast so they could get a better look at his brain. The last MRI was done without contrast. He was such a trooper and even went back with the anesthesia nurse without a fight or fear. They told us that he did well but we have to wait to hear back from the Dr for the results. That part sucks :(

After the MRI, we went to Children's Hospital emergency room. Why? Because yesterday I left a message with his current neurologist about the daily seizure activity. Instead of getting a call back from their office, the hospital's patient relations representative called me. She said "We advise you bring him to Children's Hospital." I was so confused by this that I never asked why, so I just took him. Those ER docs were just as confused as we were, but they refused to release Jayden until something was done to keep him from having to endure daily seizures until January 4th which is his scheduled appointment with the new neurologist at Children's Epilepsy Center. After almost 2 hours of waiting (and several phone calls placed by the ER docs) we have an appt to see the nurse practitioner at Children's Hospital next Wednesday and an on call neurologist agreed to advise us to raise his dosage of his current meds b/c, simply put, the seizures have to stop before damage is done. Keep praying for Jayden!