Well what an eventful few months Jordan has had. He started throwing up and not sleeping very well again. (Not like we have really slept in 3 years anyway) We called his neurologist to make an appt to see him and were told March was the soonest we could get in. Within 2 weeks Jordan's seizures had increased significantly from 2-3 per day to 8-10 per day. I called the neurologist office back and they got us an appt for Dec 22, 2011. Just a few days before Christmas but we will take it, better than March.
Jordan stayed the same until his appt, when we got to the appt we spoke to the doctor about the changes in Jordan as well as his mood changes. Jordan is always happy and he became very grumpy and antisocial over the last few months. The Neurologist decided to change his meds to Divalproic and told me Jordan must have his liver checked every few months because if his valproic acid levels increased too much it could cause permanent liver damage or liver failure. This scared the crap out of me but we were out of options. Jordan needed something to help with the seizures and sleep. The doctor also nicely gave me a verbal spanking for not calling him earlier to discuss the sleeping issues. As he said a mother of 4 can’t go 3+ years with 4-5 hours sleep per night. (Well I knew I was a little grumpy but thought I was doing fine) I explained that Jordan went to sleep each night around 1-3am and we had a toddler that wakes up at 6am. The doctor explained that this would not do and I would be no good to any of my kids especially Jordan if we kept this up, he promised me we would figure out a way to get Jordan to bed at a normal time so everyone could sleep better. We left the office with a script for new meds for Jordan and a requisition for blood work every 4 months to check his liver. We had to wear Jordan off of his old meds as he started the new meds and by Jan 7th he would be completely off his old meds.
Jordan seemed to take to the new meds very well. The throwing up seemed to really slow down, the seizures were back to a minimum and he was sleeping from 10pm every night until 7am every morning. We thought this was a miracle drug that helped everything. I was happy and getting lots of sleep and so was Jordan. The first few weeks of January were tough as Jay’s grandmother passed away and it was rough on the whole family but Jordan still seemed to be thriving and getting better every day.
January 18th I had tucked the kids all into bed and was reading some articles on the internet. I went up to check on everyone about 10:30pm like I do every night and all was good...4 kiddies all sleeping in their beds. I came back down and started reading the news online and within what seemed like a few minutes noticed it was 12:30am. I decided I had better go to bed but before I did I was going to go in and kiss Jordan since it was now his 12th birthday (Jan 19 2012) As I got to the top of the stairs I knew something was not right, I could hear noises coming from Jordan’s room. I opened the door and he was in full grand mal seizure. Choking on his tongue had lost all control of his bowels and his whole body was convulsing. I picked him up gently and carried him downstairs, laid him on the couch on his side and made sure he could not hurt himself in any way. I grabbed the phone and called 911 as I ran upstairs to wake Samantha up. I explained to the 911 operator what was happening and that I didn’t know how long he had been seizing for but that his last grand mal seizure lasted 57 minutes. They assured me the ambulance was on their way. I explained to Samantha who was scared out of her wits that everything would be ok and I needed her to call dad at work and tell him what was going on. I got dressed and the ambulance arrived. Jordan and I left promptly and I hugged Sam and felt so bad leaving her so upset and not being able to comfort her. I hope one day the other 3 kids understand if it was them I would have left with the ambulance just as fast as well. I was scared but trying to be strong so Sam would calm down. We drove to the hospital doing speeds I don’t even want to say. Were cut off by a taxi driver (love taxi drivers ugh) and I could hear the EMT in the back patching through to the hospital saying we were enroute and needing the trauma bay open with the resuscitation team waiting. That was it, I couldn’t hold it in anymore and I started to cry softly and quietly. Again trying to be strong. We arrived at the hospital and were rushed into the trauma room. Immediately we were surrounded by so many nurses and doctors trying to help Jordan. I answered all of their questions calmly all the while looking over their shoulders to see if they had got the seizure to stop. Jay showed up at the hospital within half an hour and Jordan was still seizing when he showed up. As soon as I saw him I started to cry and we both looked at each other knowing if they didn’t get this to stop soon what the outcome could be. Jordan continued to seize for an hour and 22 minutes that we know of. It was the scariest hour and 22 minutes of our lives. During that time Jordan was very close to cardiac arrest and the resuscitation team was standing at the head of the bed the entire time. His O2 levels were dropping below 60% and his heart rate was skyrocketing to 190 beats per minute plus and his body temp raised to 109.2F. I couldn’t watch the monitors anymore; it felt like I was watching my son die in front of me. They ended up giving him several doses of ativan and Dilantin before he started to calm down. Once they got the seizures to stop Jordan went for a CT scan, chest x-ray, MRI, lots of blood work, 3 failed spinal taps and a shunt series to see if they could find the cause of the seizure. Everything came back negative accept the blood work came back positive for an infection; they started him on aggressive antibiotics assuming it was an infection in his brain fluid. Not knowing how he would get an infection in his brain we just agreed to more testing over the next few days. Jordan was admitted after 14 hours in emerg and he was sleeping well in his bed. Friday was pretty uneventful as he was exhausted and slept the whole day and night. Saturday he was awake for a few hours and even gave us some smiles. Saturday afternoon the 48 hour blood cultures came back positive for an infection again so we kept Jordan on the antibiotics and they had paged infectious disease to come see us. Saturday evening I noticed he was acting strange and told his nurse we needed to watch him as he was moaning in pain and rubbing his head. That was approx 5:30pm. 6:30pm Jordan had another seizure, 8:30pm another seizure and 2 more back to back at 12:30am Sunday morning. I stayed at the hospital all weekend on a cot so I was close by to monitor Jordan as his O2 had dropped significantly, heart rate had jumped again....basically it was happening all over again. Sunday Jordan rested and slept all day, he didn’t wake up at all, Monday was much like Saturday he woke up for several hours, gave us a few smiles and slept. Monday night/Tuesday Morning between 2-4am Jordan had another 3 seizures. Jay came home from work and we went back to the hospital to be with Jordan. Words cannot describe how many tears we shed in these days and nights. The only feeling you can have going through this without any answers was that your son is slowly dying and there is nothing you can do to help him. For the next 2 days Jordan slept, the doctors said his valproic levels in emerg were 210 and the safe range is 350-700, by Monday his levels had dropped to 114, Tuesday morning they doubled his doses of the divalproic to see if we could get him into the therapeutic range and control the seizures. Wednesday the infectious disease doctors came to see us and told us there was no infection, the blood samples were negative not positive and it was a contaminated sample. We had just given Jordan 6 days of a very aggressive antibiotic for no reason, because someone contaminated his blood sample. Frustrated to say the least. Thursday the doctors came in and told us as long as Jordan stayed seizure free another 24 hours we could bring him home as there was nothing more they could do for him there. In the 8 days we were in hospital we had many visitors and people supporting us, from friends and family, I can’t thank you all enough. Sad to say the one person that should have been there for Jordan was not but maybe that is for the better. Friday afternoon we came home from the hospital. Jordan was to be kept on 24/7 emerg watch and needed to stay close to the hospital for at least a week.
It is now Feb 24, 2012 and Jordan has been back in school for 2 days after over a month off. We have rescue meds at home to give him if he goes into a large seizure again prior to calling the ambulance. He is not back sleeping as he was before the seizures but we will get there....after all, all he has done for a month is sleep so I am sure he is caught up even if I am not.
Sitting in a house watching your child sleep for a month straight is not my idea of a good time. Feeling like you are holding your breath waiting for something to happen is stressful. I don’t like to ever put my worries on others nor do I ever want sympathy from anyone but no parent should ever have to go through what we have went through with Jordan. I fear this is just the beginning and it scares the hell out of me. I know so many people think I am so strong, I am not, I cry, I am a mother I have feelings and my heart breaks I just hide it well from others. I guess this blog is as much for me as it is for Jordan. I can write my feelings, cry and get it out without actually having to talk to someone about it. I love to help others and be a shoulder to cry on but I don’t want to be the person crying on someone’s shoulder. Please keep our family in your thoughts and send positive energy our way. I have never asked for Jordan to be normal but I am asking for him to stay with us as long as he can. I am not ready to let go of the fight and neither is he. Seeing him back in school this week has made me so happy to see the smile on his face when the bus pulls up in front of our house. I cannot imagine a day without seeing that smile. <3
