Friday, December 9, 2011

Pills,liquids and more!

This week has been out of control! Bailey had her worst day ever with a total of 85 seizures that I know of. I am sure there were more during her sleep. It was horrible yesterday. My poor baby!! I think the problem right now is the medication. We are trying to make some changes in her cocktail and it always gets worse before it gets better when we do this.
So before the change this was the Meds list
    Topamax 3 pills in the morning and 3 pills at night.
    Trileptal 3.5 mls in the morning and 3.5 mls at night
    Vimpat 6mls in the morning and 6mls at night

When that stopped working and we lost control in Nov. we added a 4th medication
It was Clonazepam 1/2 pill in morning and 1/2 pill at night. This caused Bailey to be very upset and aggressive and still no seizure control. So this week we added a 5TH medication Depakote 1/2 pill at night.

This is the new schedule for Meds.
Morning 3.5 mls Trileptal
                6 mls Vimpat
Night
              3.5 mls Trileptal
                6mls Vimpat
                 1/2 pill Clonazepam
                1 pill Depakote
                  I pill Topamax
   Add the Lorazepam for emergency days

The first night Jared gave her all 5 meds it did not go well. Bailey was up all night throwing up and so so sick. The next day we gave her the Depakote at dinner and the rest of the meds at bedtime and it went  much better. But still no seizure control. So yesterday Thursday we added a 6TH medication. It was her emergency med. It only relieved her of seizures for an 1.5 hours. Today Doctor Filloux called (he calls everyday right now) to raise the Depakote to 2 pills a day. UGGG I hate giving Bailey so much medication. It is horrible to watch the seizures and it is horrible to watch her become of vegetable due to meds. Can I just scream for one minute...... I HATE THESE STUPID STUPID STUPID SEIZURES!!!!!!!!!!!!!!!!!!!!!!!! sorry this just sucks. I hope this new increase works. Otherwise the doctors wants us back up to primary children's hospital so they can increase the meds faster but while being monitored. I know that is not what we want so today I am saying a little prayer and these will just go away!! Can't wait for January and make some changes in Cleveland that will get us on the road to a normal seizure free life!!  I am trying to work, maintain the Christmas traditions. buy all of the Christmas gifts and be there every second for Bailey. I hate the thought of not being there for her after a seizure. She just needs us and I can't blame her. It would be scary to blank out so often and not be aware of your surroundings. I know its not realistic to think I can be there every second but I do try. Work just might have to wait. I can always try and go back in February.  I made so many plans when she had her good day and now we take it not day by day but at 10mins at a time. It is crazy how fast these seizures come and go. One minute we are running around laughing and dancing then the next minute she is in a cluster of them I am on the phone with the on call doctor and Jared is starting the car so we can head to the hospital.  Cant wait to say good by to these days.

Sunday, December 4, 2011

More Surgery???

We went to see Dr. Kestle and Dr. Van Orman today about what is next for Miss Bailey. At the end of the discussion it was decided that more surgery would be the best option in trying to gain more control of these seizures. The problem with that is they really don't know where these seizures are coming from and to what extent they are attacking her left frontal and temporal lobe. During the first surgery they removed about a 1/4 of her frontal lobe. If we move forward to a second surgery they would place the grids on the  frontal lobe and between the right and left hemisphere. After the placement of the grids they would close her up and then we would wait for the seizures and collect the data to find more information about where. Unfortunately Baileys chance of rendering seizure free after the second surgery does not improve. She still has a 50% chance this will work and an 80% chance it will help control them with medication. We are also  looking into areas that may cause long term damage or   paralysis to her right arm and face. She may loose her speech but with therapy she can get that back. It's a hard decision and one that I don't want to have to make AGAIN! But I feel to give Bailey a chance at driving, marriage, children, a job, college education I need to be realistic and tell my self we don't have many other options at giving her a future. They told us today that if everything stays the same she will have learning problems, her IQ will drop, the chances of finding a job or everything else you look forward to in life will be extremely hard or not available to her. So again I try put myself in her shoes and think what would I want...? I think the loss of my right hand would be worth a life seizure free. The only draw back to this is that dang 50%. I don't know how I would feel if I had to have seizures all day and  no function in my right hand as well. I just don't know! GRRRRRR! Where is my crystal ball when I so desperately need it!!! After answering all of our questions our team did suggest a second opinion. Cleveland was the top on their list so I felt great about that. After our appt. Jared call Cleveland and the good news is... WE ARE IN!!!!  They are working on her case right now and getting all of her testing scheduled. It feels like we are going to Disneyland I am so excited!! I want to hear what they have to say and pray they can find something that will guide them to the spot that is causing my little bug so many bad days. Lori is our nurse we are working with and we even get her direct number! That is huge! She said she will call Monday or Tuesday with our appt. date. That date can not come soon enough!! Well the house work is calling my name and Korbin is down with the stomach flu. I am excited to feel this hope and excitement again. After everything that has happened the last few months things were not looking great for Bailey but today the sun is shining and their is HOPE a lot of HOPE!!! Thank you!!!!!!