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Tuesday, October 13, 2009

Back home

We got home October 2. We have to go back down to SLC on November 5. She has an appointment to have more testing done. This time to try and figure out the behavior issues. She is going to have neuropsychometric testing done. I wish I could report good things, but the only good thing is that she is having less seizures (only 4 this past week). However, the behavior is completely out of control. I've been reading on the epilepsy website that kids on 2 or more medications are very likely to have bad behavior. In addition to articles that state this, there are forums where parents have posted stories. Jaden seems to be acting exactly like the rest in her situation. However, even if there is a reason, it does not make it any easier on us or her teacher. She is so bad that last week her first week back, I had to go to school all day with her. She needs a 1 on 1. I haven't had to go this week because the school has assigned her a 1 on 1. Most of the time she just will not focus on any structured thing. She takes the same amount of time to do two math problems while the rest of the class finishes the whole page. That is with me sitting there helping her, but she won't stay focused. You have to redirect her every few seconds. So in addition to the bad behavior she is completely side tracked all the time. She is getting more violent too. She hits me all the time when I'm making her do things she doesn't want to do....like getting dressed for school or having her hair combed. Today when I picked her up she was in the principals office because she scratched her teacher really bad and spit on her. She is just as bad at home as she is at school, unless she is occupied doing what she wants to do. If you try to get her to sit down for dinner or prayers she freaks out and runs away from you and tries hitting you.

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The Neurologist's N.P. just called. She has been more helpful than any Dr. I've ever talked to. She is the one that arranged for Jaden to have neuropsychometric testing done. She is going to talk with the neuropsychologist and the neurologist. I told her I was so frustrated and because the behavior part was so naughty I wonder if she is just a little terd. She said, "No, I'm really sorry, but I think it is because of the location and type of seizures that she has. It is very common to act like this with these seizures. This is the worst kind to have because of their location. Most of our behavior problem patients have these type/location of seizures." Again, glad there is a reason, but it doesn't make it any easier.

Sunday Update

Sunday update

It's so hard to get back into the blogging world, especially when I'm not at home at my own computer. I'm still in Utah with Jaden. She had blood work done on Friday. This was to check her depakote levels. One of the new drugs she is on can affect her liver and so she will have to have blood work done every 6 months. This first blood level was to see what level the depakote is at in her blood. She has an appointment on Monday with the Neurologists again. She is still having quite a few seizures. At least one a day. It's so depressing. She's on so much medication. I don't know what else to do for her. She will have one more appointment on Thursday and then on Friday we finally get to come home. Jaden, Sam, and I are all so excited to get home. We can't wait.

Wednesday Update

Wednesday, September 16, 2009

Wednesday update

Jaden is doing so much better. Yesterday her seizures were down to 35. Then today they dropped all the way down to 2. We are pretty sure that they are going to release her tomorrow. We will have to come back next week for some follow up appointments. She is going to be on 2 meds this time. She's always been on only one. The neurologist said that she hopefully will do better being on two meds because they all work differently in the body.

I have to make a decision. It's been suggested to possibly try the ketogenic diet with her. It's a very restrictive diet and to some degree dangerous. You have to have weekly contact with adietitian. Anyway, lots of components to doing the diet. Jaden's neurologist had suggested it as an option as she is running out of med options. However, the neurologist that is on call right now who has been treating Jaden isn't as hip on doing the diet. She has suggested we wait and see how she does being on 2 meds. I have to decide soon because that will determine how long I have to be down here. If we do the ketogenic diet it will be about a 3 week process before we could go home.

For updates on Ari please visit a blog that Liz started for her. It ishttp://www.prayforari.blogspot.com/. Haley is posting on it now. I would like everyone to hear from her on Ari's updates.

Pictures in the hospital

Monday, September 14, 2009

Pics in the hospital

Our visitors are related to both families. Me and Travis of course are brother and sister. Our spouses Ron and Haley are 1st cousins. Their moms are sisters.

My sister n law, Haley came downstairs for a few minutes to visit Jaden.
My niece, Ari. She is on the 4th floor and we are on the second.

Ari and Haley in their room.

My Mom, Ron's Aunt Danne, Jaden, Ron's Mom Penny, Ron's Aunt Lorri who is also Haley's Mom, Ron's sister Becky, and Ron's cousin Amber.

MIL-Penny, Becky, Amber

My sister n law Amber and Jaden

My brother Travis, my Mom, and my brother Jake

My sister Jaymi, her son Krew, and Sam

Monday's seizure update

Monday's seizure update

We made it to SLC about 9:30 p.m. Sunday. We ate dinner in the cafeteria with my Mom, brother Jake, snl Amber, sister Jaymi, and my brother Travis. After dinner we said goodnight to everyone. My sister Jaymi took Sam for me. Jake and Amber went home, Travis went up to his daughter's room and Jaden, my Mom and I went to the Emergency dept. By about 2:00 a.m. we were admitted and in our room.

Jaden had 75 seizures yesterday. Today she has had 62 so far. They are real short, but they are persistant. She is on her meds she was on + dilantin and depakote. The dilantin is used on her only in the hospital and the depakote will be her new med. I'm not sure if they will keep her on both or wean her off her old med.

It has been fun being with all the family. We got to take Jaden up to Ari's room tonight. We've recieved lots of visitors from our family and Ron and Haley's family. (Ron and Haley are cousins. Their Moms are sisters) Everyone on both sides knows both patients. It's been an eventful day. It's so nice to be with so much family.

Family Reunion at Primary Children's Hospital

Saturday, September 12, 2009

I guess it's a family reunion at Primary Children's Hospital

Update on Jaden:
We are headed to SLC to Primary. The Neurologists tried treating her with 2 different prescriptions that they called in for her yesterday. They gave her 2 drugs that they would usually give to her first thing when she gets to the hospital. They were hopeful that it would be enough to stop her seizures. Unfortunately, it didn't work and in order to give her more she has to have blood levels drawn. It did slow her seizures down to 5 sec. seizures. She is having them every 5-15 min. Yesterday they were 1 1/2 min. long and still every 5-15 min. So at least they are very short seizures now. She has to be hospitalized to be given stronger meds to stop her seizures. They wanted me to take her to the Ketchikan Hospital. I told them I didn't want to because she would be transported to Seattle. Ketchikan doesn't have an inhouse lab so they can't treat her with seizure meds. They don't have the ability to test her blood levels quick enough which is why they transported her last time to Seattle. That was such a nightmare last time. I don't want to go through that again, so we are leaving for Salt Lake in the morning.

Update on Arianna:
Her kidney's, pituatary gland, and heart are improving. Unfortunately, the liver and spleen are getting worse. They are very enlarged and still struggling. She's back to getting blood and platelet transfusions everyday for the last two days. Her sodium level keeps spiking up and down too. The metobalic problem is still unsolved. They haven't figured that out. I just got off the phone with Travis. He is so positive despite the situation. He said the Drs. wanted him and Haley to get counseling. Travis asked why. They said because parents need to be prepared in situations like this. We don't want them to blame themselves or the Drs if things get worse. Travis said, oh well in that case we are fine. We don't need counseling. The Dr. said, well that's what were concerned about. We don't think you guys realize the severity of Arianna's situation. You are both always so happy and Travis you are always cracking jokes and making all the nurses and Drs. laugh. Travis said, If you are asking me if I understand that my daughter is fighting all odds of living, yes we understand that, but do you understand that we have two choices. 1) be pessimistic and sad or 2) be optimistic and happy. Which one do think is going to be the best for Arianna.....to see us crying and upset or to see us happy. The Dr. said well that makes me feel better. We were just afraid that you were too positive because you didn't understand how bad off she is. We've just never met anyone this upbeat in a situation like this. Travis said, well you've just met Travis and Haley Lane. That's what I love about Travis. He is always positive. He lights the room up when he walks in. Everyone always wants to be in his presence. One of the nurses told him after the Dr. left that the nurses all "fight" over who gets Arianna's room.

Friday 9-11-09

Jaden has tail spinned into another one of her episodes. Only this time, what usually takes about 2 months to progress to has taken only 2 days. 3 days ago she wasn't having any seizures during the day. 2 days ago she started having them every 2-3 hours. Yesterday it increased to every hour in the beginning of the day. By afternoon, it was every 1/2 hour. By night, it was 10-15 min. Between midnight and 3:00 am it was every 8-10 min. We ended up giving her diastat at 3 am. It's an emergency medicine that is injected rectally. It is used for cluster seizures (which is what she was doing) and for seizures that last more than 10 min. After the diastat she slept until 6 am without a seizure. Then she had one again at 7 am. After that they have continued like clock work every 20-30 min. I called her neurologists yesterday. I had to leave a message for the Drs. I hadn't heard back so I called again at 7 am. The receptionist said they would flag the message as an emergency and have the Dr. call me back. It's now 10:00. I still haven't heard from them.