For those of you that follow me on Facebook, you know that Kiney is still having seizures. Although we have made several increases in her medicine levels, we haven't been able to shake the darn things since they started around her birthday. They aren't super scary seizures like before, but present as a twitch in her right eye, or a stiffening of her left arm. So scary to see? No. Do we HATE seeing it? Yes. We don't want to see her having seizures, even if it just looks like a pesky eye twich, which brings me to my next story.
After the 3rd increase in meds, we decided it's time to take further action. We had a good discussion with her neurologist and were extremely pleased that she took us seriously and didn't pass off the twitches as nothing. She suggested another EEG - where they connect electrodes to Kinley's head to detect the seizure activity. This is terribly traumatic for Kinley so we really hate doing it. But, we know its needed so we agreed. As the date got closer, I started panicking that we were going to go through all this and wouldn't capture a seizure. The test is typically 2 hours for outpatients and then they disconnect. I called the doctor back and asked for a longer EEG, which she approved. Unfortunately, they are either 2 hours, or 48 +. I just knew that once she was hooked up, I would whack the guy with a club (or Kinley's lefty which is like getting hit with a club) if we went through the process and he wanted to disconnect before she had a seizure, so we opted for the 48 hour, check into the hospital, EEG.
On Monday we got checked in and set up in our room. It was torture for all involved parties getting her connected, but in true Kinley fashion once they were done, she was a happy girl! I (over) packed many of her favorite items as I knew it would be a struggle to keep her in bed for 48 hours. We were able to let her get up a little, but it was a team effort as she was attached, Avitar style, to many cords coming from her head. She isn't the most steady on a regular basis, but once you add cords to her head and connect them to a backpack she has to wear - the girl is, as she was labeled by the hospital, a fall hazard. So we did our best to keep her in bed, with bribes of Popsicles, cheetos and plenty of juice, which she doesn't typically get. Gigi and Papa brought her some new toys to keep her entertained, which she of course loved! And Auntie M and Jackson brought her the best dinner in the world...a Freebirds burritio, which she devoured.
Fortunately (?) we got plenty of seizures recorded. She had a couple not long after we got her connected, so for us the pressure was off. She took a nice long nap in the afternoon and when she woke up, it was like someone flipped the switch. From 5 pm to about 7:30 pm, Kinley probably had about 30 or more seizures and about 7:30 I was finally called into the observation room, which was pretty cool by the way, and the doctor was waiting to speak with me. He asked if this activity was what we had been seeing to which I said um, no...don't you think I would have mentioned if she was having 40+ seizures a day!!??!! He said that they had more than enough data and that they wanted to give her the emergency meds to make the seizures stop. So the nurses can in to give her Ativan and then she spent the next few hours being super silly and giggling. Then she had the munchies :) Just kidding. They came in to do the strobe light with her and she was cracking up and asking for more. The tech thought it was the funniest thing! We finally settled in for the night about 9 pm. Unfortunately our room didn't have a bed, so Jay headed home. We had a pretty good night, or at least Kinley did! She woke up happy like always and we were disconnected about 11 am. She was so happy to be free! She did several victory laps around the floor, saying hello to all the nurses that remembered us! We felt a bit like celebrities :) They were all very impressed with her walking and talking!
We were a bit disappointed by the info we received before we left the hospital. They basically told us that her seizures were still coming from the bad side - which is really great news! If they were coming from the good side, there is not much we can do except add more meds. They are going to review the EEG and see what they can determine and also did a blood test to see what her med levels are. Then we can adjust accordingly. But, the bottom line is that we will be headed back to surgery.
Many of you have sent me questions about why she would need more surgery - surely disconnecting half her brain is about all we could possibly do. So let me try to explain as best I can. The human brain is very complex. The human brain of a child with Hemimegalencephaly is even more complex. She has one hemisphere that is bigger than the other, which makes disconnecting quite complex. Its not like ok, there are 10 connections so we will count as we go along. They do the best they can and attempt to make all the disconnects, but sometimes there is a missed connection. And if any of the bad pulses escape the bad half of the brain, they still cause seizures. We hoped and prayed that this would not be the case for Kinley - to date her post op MRIs and EEGs led us to believe they got it all. Clearly that is not the case.
So the really complex part of it all is that the right side of her brain is still in her head and seizing. And we knew that would be the case. So, when they try to review the EEG to determine where the seizures are coming from, they see the right side continuously going nutty, which basically makes it impossible to figure out which nutty piece is crossing over, causing the seizures. We have an MRI scheduled for Tuesday, which can hopefully shed some light on where the missed connection is.
So best case scenario, they are able to determine what they missed and go in to fix it. Not as great scenario, they are not able to determine where they issue is, so they perform what is called an anatomical hemispherectomy and go in to remove the entire right half of her brain. Worst case scenario is that they perform one of these two options and the seizures return. But we will cross that bridge if we come to it.
Jay and I are doing pretty well, all things considered. We hate this for our sweet girl, but we do not want to continue seeing her have seizures. Our goal is to make quick, well informed decisions on her behalf. We are so blessed to have a wonderful team of Hemi parents and doctors on our side. The other parents have such amazing advice for us and always know how to guide us when we feel that we are at a dead end.
As for Kinley, she really is fantastic! She is completely oblivious to what is going on and still improves daily. Her latest past time is singing and it is the cutest thing she has done yet! She is obessed with Somebody That I Used to Know and Call Me Maybe - hysterical! She is still super loving and as sweet as she can be. She is now able to walk up stairs unassisted, as long as there is a rail that she can use. And she has conquered slopes! She continues to make improvements with lefty, and we see her hand incredibly relaxed these days thanks to some electro something or other therapy. It doesn't hurt her, but i am still glad it happens on dad's therapy day! But it really has helped a lot! We also have her new leg braces and they have really helped with her stability and endurance. She actually likes to wear them, which is such an improvement over the last pair that never seemed right. She's also very into reading her Jesus Book, which is a rhyme Bible that was given to her by her great grandparents. She's also made a lot of progress with her straw/sippy cup! We were doing much better pre EEG when I still had energy. But I am confident we will get there! And the biggest news - we have moved her to a big girl bed! And she LOVES it! She fell out/got out 2 nights ago and we found her sleeping on the floor so last night we installed the bed rails. She just looks like such a big girl in her bed. But I love it!!
I will do my best to keep Team Kinley updated as we make these next few decisions. Of course we are always accepting prayers and positive thoughts from anyone who is will to send them our way!
Kinley all EEG'd up - not sure why it won't turn upright!
Kinley singing Call me Maybe
Showing off her new big girl bed and the blanket we got to redo her room!
Last minute update: we heard from the Neurologist and we are going to up K's meds again. They will also try to get her on the surgery discussion panel either this or next Tuesday to discuss what kind of surgery they want to do and when. Makes it all seem so real...