Here is what happened, we were sitting at a basketball game and Magnolia started acting funny. She started vomiting, which is not something she ever does. She just looked...not right. She then vomited again. We packed up to leave the game and started walking towards the exit. My mental checklist came into play. If Brian ran to get the car, which was several blocks away, and Magnolia started to seize I would be there with both T and Magnolia. If Brian and T went to get the car and she started seizing I would be alone and what if I needed someone to call for help. At this point Magnolia had not actually started to seize but was looking strange, acting off and still vomiting. I somehow knew it was coming. When we got to the door to leave the game, I was still deciding what would be the best plan of action for all involved when I noticed a cop car with flashing lights. We quickly walked to them and said we felt our daughter was seizing and asked if they could please call an ambulance. Toller, Magnolia and I waited inside the cop car while they called. At this point Magnolia was still looking strange and kind of sucking her lip. Seizure? Maybe? Brian stood outside in the freezing cold to make some calls for Toller. The ambulance arrived and T and Brian took off running for our car. Magnolia and I got in the ambulance and were relieved that the EMT was amazing! He let me hold her and when he asked about starting an IV and I told him she was an impossible stick he did not even try. We arrived at the hospital and Toller and Brian pulled in right behind us. Our dear friend Jeremy came to get Toller and took him to our house. THANKS JEREMY! By the time we got to the Pediatric Emergency Room Magnolia was seizing. She was having a simple partial seizure. She continued to look all around the room but not focus on anything. The wonderful nurses got an IV started in her scalp and ordered a dose of Ativan. It took a full 5 minutes for her to stop seizing. They then stared a round of Fospenytoin, a seizure drug, in her IV as well as Vankamison and Rosephran, which are antibiotics, in case an infection was causing the seizure. The ER doctor of course had never heard of WHS. We were very happy with the fact that he admitted that and really seemed to listen to us and asked us many questions. He did want to do a lumbar puncture to check for meningitis, which we declined. He did do a chest and abdominal x-ray. They took a lot of blood for several labs and also cathed her to get a urine sample. Getting blood was as horrible of an experience as always. The scalp IV would not give any blood so Magnolia was a little pin cushion. I warned all those that got ready to try and stick her what was going to happen. They would search for a vein, find it, stick her and it would suddenly disappear. They finally got what they needed. Most of her labs were normal but her lactate and ammonia were both high.
As we prepared for a move from the ER to PICU Magnolia was acting very strange, but as I have never seen her on that many drugs I was not sure what to expect. I asked the nurses several times to check her. She again, was just off. When we arrived at the PICU I started to get worried again and when the nurses were about to move Magnolia to weigh her I noticed a huge wet area where her head had been. The nurses said it was probably sweat, but her hair was dry. Right then she started seizing again. This seizure was the same as the one in the ER. When I was talking to Magnolia and stroking her cheek her lips parted and an enormous amount of saliva came pouring out of her mouth. I am thinking that is what had happened on the way to PICU with the wet area around her head, making me wonder if she was seizing then too. She was given a dose of Ativan and after 5 minutes she still was seizing. They gave her another dose and after 4 minutes (which the nurse thought was 5) she was still seizing and they wanted to give her a dose of Keppra. I told them it had only been 4 and could we wait until it had been 5. At exactly 5 minutes she stopped. They still wanted to give her the Keppra, but her IV of Fospenytoin was not finished yet and I asked if we could wait a couple of minutes. The PICU doctor agreed and we waited 15 minutes. During that time Magnolia started to move around and seemed to re-join us. At that point I was okay with giving her Keppra. I have no idea whether giving it to her right away would have done any harm, but at that point my goal was to not have to get her so sedated that we needed to intubate her. At this point it was 2:20 am. She was very restless and agitated for the next several hours and vomited again. She had a mild fever throughout the night. I finally got her to sleep while I was holding her. Of course just about the time the morning lab came. They said they need a lot of blood again and it was horrible. They poked and poked and poked in both arms, both hands and both feet, several time each. They also tried the scalp IV that was being used to give her antibiotics and anti-seizure meds with no success. Magnolia screamed and thrashed. It took 3 people to hold her down. Finally our awesome night nurse called down and asked exactly how much blood they NEEDED. The lab of course tried to tell her they needed the same amount that the lab tech said they did. The night nurse fought with them and informed them it was not going to happen. They finally agreed that they could accurately run the test with a whole lot less blood and all but one could be done with a heel stick! Seriously?! I was actually too thankful at that point to be pissed that they had poked and poked her.
My mom and dad arrived early that next morning. Brian took Toller to school and spent some time with him. He was so scared the night before. Toller processes things in his own way and sometimes when he does not tell us what he is thinking it can be difficult. Thankfully Toller kept asking Brian about me as well and he asked Brian if I was going to catch what Magnolia had. WOW! We constantly tell him to wash and sanitize so that Magnolia will not catch our germs. Never for a second did I think about telling him we could not catch seizures or WHS. We suck! I seriously wonder what other misconceptions he has that he is worried about. We ask all the time if he has questions and occasionally he does, but it is obviously time for another chat.
We saw the intensivist in the morning and he told us our neurologist wanted an EEG. The intensivist, who was wonderful, talked to me about the fact that he was really hoping to not have to sedate her for the EEG. He also explained which drugs he would use if absolutely necessary and why he would pick those drugs. I really liked him. The EEG was not as easy as the ones we have done in the past. Magnolia is older and moves and fights things a lot more, but we still got it done without sedation. Thankfully Brian was there because it took 3 of us to try and get a decent EEG. Magnolia vomited again right after her EEG. She continued to have a mild fever. Her eyes were also super red and started to have goop so they gave us some eye antibiotics. Those are also harder to put in then when she was younger. Sometime I forget how far she has come and how much she has changed.
Later that afternoon we had a very special visitor. Magnolia's NICU doctor came to visit! We love love love him and seeing him was wonderful. He could not believe how much Magnolia had changed. It was so sweet that he came to visit and it was awesome to see him.
Our neurologist came later that evening and talked about seizures and what his suggested plan would be. Noticed I said suggested. I really like our neurologist. He asked my input. It helps he has been seeing Magnolia since her birth. We talked about the different drugs out there and the side effects of them. We decided on 50 mg twice a day of Keppra. We are hoping she has success with it. It is amazing what different care you get with a doctor that you have a history with. He felt doing a lumbar puncture or having her on antibiotics and all of that was not necessary. He said exactly what I was thinking...she was going to have seizures. This was just her time to start. He said we could move to peds and get out of the PICU which was good news because Toller had not been able to see her yet and he was very anxious to do so. When Toller, Brian, my mom and dad came back from Culture Night at Toller's school Toller waited in the waiting room until they moved Magnolia from PICU to peds. He showered her with kisses and recited to her the poem he had made up for her, "Magnolia is a blossom that is awesome!" He also gave her notes and pictures that a couple of his friends from school had made. Too sweet!
Magnolia had a better night that night, but was still restless. My dad stayed with Magnolia and me that night in her room in pediatrics. We took turns staying up with her. On Saturday morning my sister arrived. It was wonderful to have her there. She loved on Magnolia and had some great one on one time with Toller. They had a blast. The peds doctors came in and...well let us just say it was great when her neurologist came back. He asked if there was a reason we wanted to stay in the hospital. We said no! He said then go home. THANK YOU! Magnolia had been seizure free for longer than 24 hours, she was eating, drinking, somewhat sleeping and no longer on antibiotics. The only thing we had to figure out is if we could find a 24 hour pharmacy that could compound her Keppra. Luckily we did. We arrived home late Saturday night.
Sunday Magnolia and I did not leave the house. Everyone else did, but we did not have to. My sister and dad went home but mom stayed so I could go back to work.
We are so lucky to have such amazing friends and family. Many people messaged, called, came to visit, sent love and prayers. Thank you from the bottom of our hearts. We love and appreciate you all.
|Finally resting in Peds|
|Sleeping in Papa's arms|
|Check out my black and blue arms. Ouch!|
|Love the teen room in the hospital. T and Heather loved playing XBox.|
|Playing with her foot, obviously she is feeling a bit better.|
|T was trying to get Magnolia to smile for this picture. Of course it worked...now if T was just a bit taller so she would be looking at the camera.|
|She spends so much of her time watching her brother|
|Life is not a beach at the hospital but at least they give you something cool to stare at while there. This is the wall of her hospital room.|
|My wonderful sister who is an amazing aunt! Heather you know that this means that during Christmas Scott and Isabella get to hold Magnolia more than you, right?|