Old post!! Seriously Long Seizure!

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Do not worry, this post is about the seizure Magnolia had on January 19th. 

I started writing this blog to help keep friends and family up to date.  I now write this blog to keep old friends, new friends and family in the loop about what is happening with us. I also write the blog as a sort of baby book, journal, therapeutic measure and a timeline/record.  That is why, even though Magnolia's seizure was 10 days ago, I am writing about it. 

Magnolia had her Speciality Clinic appointment on Tuesday, January 17, 2012. Speciality Clinic is where we sit in a room for 3 to 4 hours and several doctors/therapists/social workers etc come to see us. It is something Magnolia has been going to every 3 or 4 months since she was born. It is the place where we visit with several doctors including her neurologist. We had not seen him since December when Magnolia was in the hospital with her first (and second) seizure. Magnolia was pretty knocked out from all the drugs as well as just plain tired from seizing at that time. When he saw her at Clinic he was amazed at how wonderful she looked. He also loved that she took his little 'knee whacker thing' from him and kept transferring it from hand to hand.  (Transferring toys from one hand to the other is her new favorite activity. She does not use her hands to work together to manipulate something yet, but we are working on it. It is like her hands play hot potato. The second her other hand grabs ahold of the toy the first hand lets go instantly. Silly girl!) Anyway, he gave us a refill on Keppra and said that the low dose seemed to be working and he would see us in 4 months. I smiled and said, "Yep, see you in 4 months!" He responded, "Unless she seizes before then, then I will see you sooner." I laughed and said, "See you in 4 months!" Stupid Stupid Stupid!! I know better than that! Seriously! Talk about a major jinx!!

We also saw her ortho doctor and explained that her current AFOs were not working the way we would like. Magnolia is starting to bear some weight on her legs, not for long and with her knees totally locked, but it is a start. So we got new AFOs casted. We have not picked them up yet. I am anxious to see them.  We were also informed she still needs to wear her hip brace. UGH, but it is better than surgery or a spica-cast.

Thursday, January 19th, 2012

Toller and I were at school. Brian was at work, thankfully in town. Magnolia was home with her nurse Cindy. Cindy called me at work on my cell phone, which she has never done. My heart started racing. She told me Magnolia was fussy for about 30 minutes and then got really hot. Cindy took her temperature and it was 101.5. She gave Tylenol and called me. I told her to get the Diastat ready and I was going to call Magnolia's PCP  and Brian.  I called Brian, he left work immediately and headed for home, and I called the doctor but by then Magnolia started seizing. Cindy gave her the Diastat and her right hand convulsions stopped but she was still seizing. Brian got home and loaded Magnolia and Cindy in the car and headed to the ER. I ran out of school and headed to meet them there. (I work with the most amazing group of people. I am beyond lucky!!) My drive felt like it took an eternity! I could not get there fast enough. Do you ever realize that when you are in a hurry no one around you ever is? UGH! I try not to have road rage against people who are driving super fast and seem to be in a hurry because I always think to myself they could be headed to the hospital to meet a loved one. Well this just confirmed that. I was weaving *safely* in and out of traffic like a maniac. I arrived at the ER and ran inside. The ladies working the desk were also not in as big of a rush as I was. They slowly gave me directions to where Magnolia was. UGH! When I finally reached her I instantly looked at Brian, Cindy and the doctors and said, "She is still seizing?!?!?!" They were having a hard time getting an IV started.  Thankfully we had the same two wonderful nurses as we did back in December and they both said they remembered her and how hard of a stick she was. They got one in her scalp after only a couple of tries. They administered Ativan. We waited. We waited some more. 5 minutes passed. They went to give another dose of Ativan and her IV infiltrated. UGH! They looked for a new spot. Tried her foot, no luck. They looked at her other semi-okay scalp vein and decided to give it a shot. After the first fail the doctor told me not to worry, if they could not get that IV they could always do an intraosseous infusion (the needle is injected through the bone's hard cortex and into the soft marrow interior which allows immediate access to the vascular system.) The nurse looked at me and told me she had this. She was right. Scalp IV secured. The doctor wanted blood work for tests and we knew getting another vein was a long shot so the nurse quickly got as much blood as she could from the scalp and then administered the second dose of Ativan. Still seizing. We were talking about giving her a loaded dose of Keppra when she finally stopped. Her seizure lasted 90 minutes!! After she started to, very slowly, come around we started working on getting her transferred to the PICU. Once there she was given a loaded Keppra dose. We did not give it to her earlier because we were afraid she would need to be vented. I assumed she would crash from all the drugs and the long, exhausting seizure. NO! she became agitated. Combative! I heard that loaded doses of Keppra sometimes have that affect on people. I assumed she would have had that reaction in December, but because she did not then I did not think she would this time. Wrong. She was thrashing and whinning and completely combative. I could not get her to calm down. She was on oxygen the whole time. She hated it. She has not had to be on oxygen before and hated the tubing in her nose. She kept trying to rip it out and everytime she would her stats would drop. They finally had to tape it on her. That still did not stop her from trying to rip it out.  Her fever dropped.

We had wonderful nurses in PICU. Our nurse from December stopped by to say she was upset to see us again. She had hoped she would not see us again for awhile.  This particular nurse is an epileptic.  When she was taking care of Magnolia in December it was wonderful to have her be able to answer questions about seizures not only from a nurse's point of view, but also from someone who has them. Her best explaination of what it feels like after having a seizure is this:  "3 drinks past fun and then you fall down a flight of stairs!"  I loved it. It made perfect sense.

I would love to see My file in Magnolia's file. I know I have a 'that parent' note about me. I honestly thought about what it would say and then figured it is actually better if I do not know what it says.  I can just say I am happy with whatever they have written about me because this hospital experience was different and great.  Every resident who came in asked permission to move/listen/mess with Magnolia.  They admitted they knew nothing about WHS and asked wonderful questions.  The doctors and nurses did not want tons of unneccessary tests. They did not try to get blood from her ten times before realizing they did not really need that much. They were awesome!! So kind and sweet. They checked on me as much as they did Magnolia. Several asked about Toller and how he was handling it. The Child Life Specialist (the best thing ever to be invented) stopped by and chatted. I spoke one time about having people starting to get to remember Magnolia and us. I realize that if that is to happen it means we are spending time in the hospital, which is not a good thing, however it is wonderful that people are starting to know us.

As nice as the people in PICU were we wanted to get out as quickly as possible. It is RSV season and we did not want to get sicker.  Magnolia's fever would come and go. She still needed oxygen. Her blood work all came back fine. Her urine came back clean. They did a chest x-ray and it showed a little right perihilar infiltrate. They checked for RSV, influenza, parainfluenza and everything else respiratory they could. All came back clear.  They decided she had some virus or she aspirated during the seizure.  Because of her fever before the seizure they assumed it was some virus.  She also started sneezing and coughing while in PICU.  We spent Thursday night in PICU and when our neurologist came to visit he told us we could go to Peds. 

Every time we end up with an IV in her head we lose a little hair. The poor girl does not have enough lose.

Still so tiny

We spent Friday and Saturday night in Peds. Magnolia was doing better, but could not get weaned off the oxygen. Every time they would start to lower the rate her stats would drop. She was on less than 1 liter and her stats would not go below 85, but that was low enough to put her back on.  Finally Sunday morning she was able to come off and we got to go home. 

We are so thankful for all of the love and support from all of our coworkers, friends and family around the world.  We know we have a lot more hospital stays in our future but that does not make each one any less hard to do.  The overwhelming support means so much to us and we appreciate it more than we can express.  Thank you.