surgery 1 & 2.....

wow its been a long week and a half......well let's see the first surgery took place on the 6th of May. It was 6 hours and they placed a tailor made grid on his brain which consisted of 92 electrodes. These electrodes were placed in many areas on the right side to track his seizure activity and to also record the exact location of his seizure activity. Luckily within the first two days after the grid was placed he had probably 12 seizures so they got lots of valuable information. Basically the rest of the week he was able to be somewhat comfortable with Adivan which stopped his seizures for the most part for the rest of the week. Then on Wedneday May 13th Niklas went in for his second surgery and it lasted 7 1/2 hours. They removed as much of the trouble spot as they could as it was close to his motor. The surgeon seemed very happy with how the surgery went. He said that hopefully niklas will be seizure free with medication these next 9 months and then we will try to wean him from his medications slowly to see if he can get off of them. Right now where we stand ( friday) is.....he is having some pain medication throughout the day and he is also on a steroid for 5 days to help with swelling and also to help with inflammation in his right arm and hand. He is only able to move his hand and arm a little bit right now and the doctors hope that within the next three days he gets a lot more movement. If he does then he could be released on tuesday of next week. If his movement does not return by the end of the week he will have to be transported to children's in oakland for the week to have inpatient physical therapy...which he will hate so I hope that is not the case. We are basically taking it day by day for right now. The scar he has is large but luckily with time his hair will grow back and hopefully it won't be very visiable at all.......thank you everyone for your love and support. this has been such a tough and emotional week. I for certain have never done something so hard in my life. This struggle has been going on for over two years. we are tired and at the end of our rope but for sure we will never give up hope. If this surgery for some reason does not prove to be a sucess which I don't believe will be the case then we will pursue other institutions.....I think we have a winner here though.

Thursday - The Day After

Yesterday Nik went down to the fourth floor and they performed the resection of the seizure focus surgery. We left him in the hands of Dr. Auguste and his "A" team at 9:00am and he returned to his bed at 7:30pm in the ICU. The doctor said it could not have gone any better and he actually found a pea sized mass in the exact area of the resection that he believes was the cause of this whole thing. He took it out as well and brought him back to us with great hope.
He is doing well. They took the breathing tube out, the feeding tube out and he just ate Trix for dinner. As long as he keeps drinking fluids regularly they won't need to hook up the IV again. He is receiving a steroid for the swelling in his brain with the hope that it won't be needed much longer. The recovery time for us here is all up to Niklas. Once he is on his feet and able to function "normal" we will be able to be discharged. Probable sometime early next week if all goes well.

We are still taking this one day at a time and are hopeful for Nik's future. All of the thoughts and prayers do not go unnoticed. Talk to you tomorrow.

Day 3

We just woke up on Saturday morning and Niklas had some water (2 cups) and some chocolate pudding. The first thing he has eaten since Tuesday. Last night was pretty good except for about an hour and a half in which he wanted daddy to pick him up and take him home. How do you explain what has happened and he can't get out of bed?
Friday was eventful. The neurologist came in and did a "mapping" of Nik's brain. It took about 3.5 hrs with good results. Nik has 96 sensors within the plate they placed on his brain. The doctor isolated and stimulated certain sensors to try and determine the function of specific parts of his brain. This mapping is done so they can plan out the second surgery when they plan on removing the lesion causing all of this. They know where the lesion is on the brain but were not sure as to the specific function that part of the brain has. After the mapping it was determined that the focal point of his seizures controls his left eye. There was concern that it was controlling his left hand. This is good news because on Wednesday they are going to remove the lesion. If it controlled his left hand and it was removed it would paralyze his hand for good.
We are very encouraged by this outcome.
Thank you all for your prayers and help. More later...

day 2

Day after surgery and we are doing well. Niklas is in and out of consciousness as he is on lots of pain medication and he is still coming off of the medication from the surgery yesturday. He is to be monitored for another 6 days ( the electrodes are on his brain and the chords come out of a little opening in his scalp) they then attach to the machine which monitors seizures. Our doctor has a video monitor at his house of Nik's room at the hospital-kinda crazy. we are hanging in for now.

one surgery down....

today Niklas had his first of two surgeries and it went well. There was a team of 10 in the operating room at least and he was so brave. We saw all of the doctors and assistants in the hallway when we said goodbye to Niklas before surgery and it was kind of surreal. I felt like we were on an episode of ER. He was in surgery for 6 hours. I took pictures of him after his procedure, unfortuately I forgot my plug to download them so I will do it tomorrow. He is doing ok.....his head is wrapped up and he looks like a mummy. His face and eyes are swollen and we are told it will be like that for a couple of days. he is resting now and he has actually had a few seizures in the last few hours because he did not get his usual meds. They have given him some medication to settle him down and make him comfortable. The doctors are going to monitor him for the next five days to make certain of the problem area before they go back in next week to remove the lesion. Brent and I are doing ok its gonna be a long two weeks......but its nothing compared to the two years he has been dealing with this.

Finally the day has arrived

Well its the night before Nik's big day....in a way it feels like the night before Christmas. Not that any of us are excited that he will be in surgery for 6 hours with doctors working on his brain, but I feel that this surgery is going to give Niklas the freedom and childhood he so deserves. for the past two years Niklas has had to deal with seizures that have been terrifying, annoying, and most of all debilitating. We know niklas has so many wonderful gifts to offer anyone he comes into contact with. He has a way with the ladies, he is extrememly bright, and his self-confidence is ridiculous. I can't wait to see what he has up his sleeve in the coming months. please say prayers for Niklas tonight and tomorrow. It's really in gods hands...although sometimes I like to think I'm god. I have no control over this situation whatsoever. I gotta trust him and the doctors that are going to be working on Niklas tomorrow.

sleeping angel......

I took this picture of Niklas because he is getting his hair cut tomorrow as short as he will allow our hair lady to cut it. Obviously the shorter the better for Wednesday. I'm going to miss his longer hair he looks so handsome. I especially love the fact that he let's me do whatever I want with it in the morning and I get to put my products in his hair. Peter would rather have nothing to do with products.....so we are less than three days away. Everything for the most part is in place as far as help and support. How do you really prepare for your child to have brain surgery, twice??? His first surgery on the 6th is 6 hours long. Arrival time is 6am and the surgery is set for 7am. It all has become so REAL about now.