1 Step Forward, 3 Steps Back...

We enjoyed our one day of no seizure meds.... One. Day.

 Dec. 11, 2018 will never be my favorite day...

We woke up early, way too early because Ben had a bloody nose at about 4am. It took over an hour for it to stop without starting back up again. So, we were all exhausted as we got ready for school and headed out. At recess, the boys were playing football like they always do and I heard one boy yell that someone was hurt. I looked over and there was Ben on the ground, having a seizure. It's been a while since I have witnessed one of my babes seizing, and as you can imagine, I went into emergency mode. I ran over to him and with help from school staff, made sure he was still breathing and then got him inside the school. All of the fifth grade witnessed this, including Conner...  As Ben was waking up and coming out of his post seizure haze, we decided that I would take him to the hospital myself. So, I called Nick and told him what had happened and then drove Ben to the hospital. I asked Conner what he wanted to do and he decided that he wanted to stay at school and his teacher was nice enough to eat lunch with him. Ben was seen in the ER and Nick met us there. While we were in with Ben, we got a call from school saying that Conner had just had a seizure of his own. I told them to call an ambulance and get him to us at the hospital. A friend from school was able to ride with Conner and she told us that when he had started seizing, he had fallen and hit his head. For that reason and because he was disoriented from the seizure, the EMTs put a neck collar on him. So when they rolled him in and I stepped out of Ben's room to meet Conner, that was a scary sight. Luckily, Conner had a bump on the head but they were able to take the neck brace off once they completed their exam. The ER doctor talked to our neurologist and just like that, the boys had to start back on their seizure meds. 

Ben and Conner were both very tired, but were both talking to us. We decided that Nick would go home quick to take my friend back to her car and to get clean clothes for the boys. We thought we would be taking them home in the next hour or so. Unfortunately, there was a problem with Ben's blood work. His platelet count was extremely low (which explains the long nose bleed this morning). I wasn't sure what that meant, but the ER doctor wanted to discuss it with other doctors. Meanwhile, Nick returned and I told him that there was something wrong with Ben. The ER doctor came to talk to us and let us know that Ben needed to be transferred to the University of Iowa Children's Hospital because that is where the best pediatric hematologist is. They wanted to take him by ambulance, so Conner was discharged and went home with Nick to pack a bag, and I rode in the ambulance with Ben to Iowa City. Ben was admitted to the Children's Hospital and the doctor told me that he would need IVIG which is a drug treatment with donated plasma to help increase his platelet count. He has what they call ITP, which basically means the antibodies in his blood are attacking his own platelets. Could be caused by a virus or an autoimmune response, they just don't know. Nick and Conner came to Ben's hospital room and we spent the rest of the evening trying to wrap our heads around what had happened. Nana and Gramps drove over for a visit, too. We wanted Nick to be able to get Conner home, so once the nurses started Ben's IV drug treatment (which ended up taking over 2 hours) Nick left with Conner and I stayed overnight with Ben. He slept most of the night and I watched him sleep...  At about 4am, he woke up and wanted to play with the TV and the tablet with games in his bed. He thought that was pretty cool and he also enjoyed ordering his own food from the tablet! On Wednesday, the team of doctors made their rounds. They concluded that Ben did have ITP and explained it in a bit more detail for me. The nurse had to do another blood draw, but we were told he could home later that day. He was discharged Wednesday afternoon after they had taken more blood to get another platelet count. The count was far from normal but it had increased, so we were sent home and told to come back on Friday to meet with the pediatric hematologist in the clinic.

Our heads are still spinning, but for now, our boys are safe and we are doing everything we can to make sure that they stay that way.... It was a scary couple of days for all of us. Ben and Conner both had to deal with some pretty heavy stuff. Conner wants to go to school on Thursday, but Ben will have to stay home for the rest of the week. Thank you to everyone who reached out, sent messages, offered prayers, and were there when our family needed support!