I HATE SEIZURES!!!!!!!!!!!!!

We spent 13 hours in the ER with Jack yesterday.

Friday morning Jack woke up early -- he was happy and playing...ate breakfast and when I went to put him down for a nap at 9:15 am he vomited a bit. This put my radar up a little -- so we went back out to the living room. He started acting really strange. He was not himself. His personality seemed altered. He was rocking and humming and smacking his lips. I could still get his attention but could not get him to smile or laugh. He was answering my questions but would repeat the answer over and over. He started tossing his blanket over and over...I put him on the sofa and he started picking at the sofa over and over again. His heart was racing and he was hyper and seemed so off and far away. Then he started grinding his teeth.

In the middle of all of this I called Jason and told him I thought Jack was about to have a seizure. When I described everything to him and he heard him humming he said he sounded off and it definitely sounded like seizure activity to him. I hung up with Jason and called the neuro's office. He wasn't in and would only be able to return my call in the afternoon. I then called the pediatrician and asked if I should give Jack Diastat based on the suspected seizure activity. She said Jack IS having a seizure and I should give him Diastat immediately. So almost 45 minutes after everything started I gave him the meds. He didn't stop the behavior until about 10 minutes after I gave him the meds. I asked Jason if he could come home from work and he was able to.

I had also called my mom and she got there right when Jack was coming out of the seizure. He looked at her and knew who she was, but didn't laugh or smile like he usually does. He didn't sleep like he did last time, but he was definitely post-itcal and sedated from the meds.

When Jason got home my mom left and Jack was still about the same as before. We weren't comfortable with his neurological state so we decided to go to the ER at the med center. We grabbed our things and took a "just in case" bucket thankfully because Jack vomited on the way there.

We waited in the triage area for almost 3 hours -- they were PACKED FULL! When we were taken back Jack was given an IV right away and we realized he was also running a temperature.

We were in the Trauma area in a bed in the hallway. We saw so many terrible sights and a lot of people and young kids were coming off of the Life Lion and Medivac helicopters. I NEVER want to see sights like that again. All I can say is please, please wear your seatbelts, motorcycle helmets, and gear up your kids when they ride bikes or skateboards or anything else with wheels.

They did blood work and tried to get a urine sample but they couldn't get any -- even with a syringe -- POOR GUY! Jack was taken for a CT scan and shunt x-ray series as well as a chest x-ray. The CT scan showed his shunt was in working order and his ventricles were the exact same size as they were on our baseline MRI earlier this year. So a relief -- no shunt issues. The peds resident was VERY nice -- he took a thorough interest in Jack and was probably the best resident we've had with in over two years...and we deal with quite a few. He called Jack's neuro and he upped his Tegretol to 8 ml twice daily from 7 ml. He also said he wants to see us Monday in clinic -- and we need to call asap Monday morning.

Jack's white count came back elevated and he was running a temp of 101-102. They told us the CT scan showed a sinus infection. So yet again before he showed ANY signs of being sick he had a seizure. I cannot wait to try and see if there's anything that can be done about this or if this is just going to be our new normal. I certainly hope not.

One thing we did learn is we should give Diastat right away if he has the same type of seizure again. At one point I felt terribly guilty because I let it happen for 45 mintues before I gave him the meds. I really wanted to make sure it was okay which is why I called his dr's first. I didn't know if Diastat should only be given if he has loss of consciousness, convulsions, etc. Now we know.

The ER was crazy and we waited and waited and waited hours between visits from all of the departments. We saw the hours tick by -- luckily Jack was sleeping for most of this. Jason and I were deliriously tired and we were finally discharged at 3 am after getting there at 12 noon.

We were discharged with an RX for antibiotics and instructions to follow up with neurology on Monday. The RX was for Zythromax and I remember reading somewhere that Tegretol and Zythromax do not mix and shouldn't be taken together. When we asked the dr she said it was fine.

This morning we called the pharmacy and the pharmacists said we were absolutely correct. Zythromax will force the Tegretol to stay in the body much longer causing dangerously high levels. I am so glad we didn't take the dr's word for it. You bet the neuro is going to hear about this so no one else in the ER is ever prescribed that combination. Very scary.

We were so torn. We didn't get to see Morgan at all yesterday. Jason called upstairs to the NICU and explained to her nurse what was going on. Having both kids in the hospital is more than we could process last night. Not to mention I just had pretty major abdominal surgery two weeks ago. This is not how it's supposed to be. Our little family HAS to have some better times coming.

I went to see Morgan this afternoon and she was so cute! Up to 5 lbs, 9 oz -- officially over her birthweight! She even looked different since I saw her Thursday night. She no longer has the IV head gear and it's back in her arm. Nothing has changed -- they still plan on starting her feeds slowly on Monday.

When I got there she was crying and her nurse was trying to console her. She's sooooo hungry. I held her and she grabbed my hand and with all of her might shoved the binky in her mouth. She settled and I rocked her to sleep. I couldn't stay long because I hadn't eaten in days and Jack needed me at home too. Daddy's going in this evening to see our girl. Please keep her in your thoughts on Monday!!