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.

When it Rains it Pours

Friday, September 11, 2009

When it rains it pours

As for Arianna she had 2 really good days. The last 2 days she didn't have to have a blood transfusion or a platelet transfusion. Mom and Travis said that her countenance was so much better. She was smiling, laughing, and talking. She got to talk to her brothers and sisters over skype. They were all so happy. Last night she had a bad night. Travis said she was in a lot of pain and didn't sleep well. She had to have a blood transfusion and a platelet transfusion this morning. Hopefully, this will just be a little dip in her recovery. The last 2 days have been so promising.

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.

Seizures increasing

Jaden had 3 seizures Sunday night. That was out of character, but then she went and had 4 seizures Monday night. Then she had one Tuesday evening at 6:00. Then last night she had 6 seizures. When she woke up for school she told me she didn't want to go to school because she felt like she was going to have a seizure. I let her stay home since she had had 6 during the night. Well, she's had 7 more today and it's only 4:30. It's a good thing I didn't send her to school. I'm not sure what's going on.

Update on Jaden for August

We went on our trip from Aug. 10th-29th. I didn't keep exact dates on her seizures. I only kept track of how many. She had 6 while we were on our trip. Since returning she has started having more again. We met with her neurologists at Primary Children's Hospital. They are going to discuss our options and get back to us with a game plan.