Well little Jordan had an exhausting month. He started back to school this month and he was so excited to see his school bus pull up in front of the house. He seemed to be doing a little better on the clonazepam and his seizures were down to 2-4 a day.
One saturday evening I was getting ready to give Jordan his bath and get him ready for bed so I asked Travis to sit with him and wait while I ran the bath. Travis came running into the bathroom a few minutes later and said I had better come look at Jordan. I asked him why, what was wrong and he said Jordan was shaking and choking. Jay and I rushed into the bedroom and Jordan was having a grand mal seizure. It was the scariest thing I have ever witnessed from our children. We quickly ran Jordan down the stairs and tried to see if we could get him to come out of the seizure. We laid him on his side and made sure he was not choking and talked to him to see if we could get a response. Jordan was not responding to us at all he continued to convulse and shake. We rushed him into the van and to the hospital. (No sense calling the ambulance since we only live minutes from the hospital we have found out we can get him there quicker)
When we arrived at the hospital they took Jordan in right away and the doctor came over to see him and asked how long he had been convulsing for. At that time it had been about 10 minutes. The nurse was cutting his clothes off as they gave him his first dose of ativan. Another nurse was trying to get an IV started and the doctor said they needed the IV to give him some more meds to stop the seizure. What was minutes seemed like hours and the doctor gave Jordan another dose of ativan through the IV. The seizure continued. They then decided to give him another dose of ativan rectally. By this time he had been having the grand mal seizure for 30-35 minutes. I asked the doctor what was wrong why wasn't the seizure stopping and he assured me they were doing everything they could. Jordan was given another dose of ativan through his IV and about 10 minutes later I told the doctor I knew that a grand mal seizure that lasts more than 5-7 minutes can cause a stroke and I felt he needed to do more to stop this. He pulled me aside and said they were doing all they could but they had to be sure not to give Jordan too much medicine or it could kill him. I was in tears and asking why this was happening. I don't think I have ever lost my cool in the ER before with dealing with doctors but I was very close. I was a mother in pain, hurting and feeling helpless. There was my little boy suffering and I felt like nobody was helping him and there was nothing I could do. After about 50 minutes of the seizure continuing they gave Jordan a dose of dilantin and within 2-3 minutes after that the seizure stopped. In total it was almost an hour, although it felt like hours and hours. Jordan was given 4 doses of ativan and 1 dose of dilantin in all.
I sat with Jordan holding him, stroking his hair and crying. I felt so helpless and wanted him to be ok. The doctor came back and asked me if I needed anything. I told him I needed answers. I explained everything to him from the last 10 years and told him I had been given nothing. We were told basic details and I was starting to get upset and felt like the doctors knew more than they were telling me. He read over Jordan's chart and told me that all he could say was that Jordan's disability was progressing and they knew it would get worse. So I guess we just have to wait and see what's next I said to the doctor and he nodded his head yes. Jordan slept and slept. He was exhausted and they had given him enough meds to make him sleep for hours. I was visited by a friend and she helped me to pass the time waiting for Jordan to wake up. We had several long talks with the doctor and found out he had worked with both my Aunt and my Uncle in different hospitals in Toronto. I asked him if Jordan was going to be admitted or sent home. He told me there was no reason to keep Jordan in the hospital he would just sleep on and off for a few days and they were sending us home with a follow up appt to see the Neurologist. We were sent home and Jordan slept for days. He was so tired and his body was exhausted. He had lost several pounds because he wasn't staying awake long enough to eat. Once back to normal we started feeding Jordan loads of carbs to try and pack on a few pounds. We went to the follow up appt with the Neurologist and Jordan's seizure meds were doubled and we were told we would be called with an appt in 4 months again but if we noticed Jordan's seizures increasing to call for an appt sooner.
It is now Jan 2011 and the beginning of a new year. I wish for health and happiness for Jordan and a quiet year for us all. Jordan had a great Christmas holiday. He was spoiled along with his 2 brothers and his sister. We bought a new LCD TV for Jordan for his bedroom since he loves his movies so much and it is his one true happy time.
I want to thank each and every family member and friend that has been there to help us through some tough times, I know the toughest are yet to come and I might look to some of you to help me through it again.I want to thank my awesome children and my wonderful husband for always standing by me and knowing I try my best to be a great wife and mom. I thank you Jay for taking my children and raising them as your own, for being there for me through it all and always being a shoulder to cry on. I thank you all of my friends and family for spending countless hours at the hospital with me, bringing me coffee or food to the hospital or ER, for listening to me cry and stress and even for being there for me when everything seems fine. Please remember I would pick you up if you fell down, I would hug you if you were sad, I would cry if you cried and I will continue to love each and every one of you in your own way. Jordan, me and our family could not have made it this far without the support of our great family and friends. I will not lie and I can say some days it seemed like I was alone in all of this and I felt like I could not handle anymore but I always seem to come through it with minimal damage. To date Jordan has spent over 2 years total in the hospital and he has gone through 11 surgeries. He is the strongest person I know, and his strength continues to grow. Thank you and I will add updates and more info as time goes on.
Meda :)
