Nikolena was discharged from Shands on April 6, 2004. She developed a staph infection surrounding her brain and had to have emergency surgery to take out the electrode grids. She was never able to have the epilepsy surgery.
Although we are home now, she is still on IV antibiotics and has a PICC line in her arm. The antibiotics are administered 24 hours a day, and she'll be on them until approximately May. She also will have home health services until then.
UPDATE JOURNAL
February 20, 2004
Nikolena was scheduled for a WADA test on Feb 18, 2004, at 6am, down at Shands in Gainesville. My dad, Nikolena, and I went down the night before and got a hotel room so that we could be there early and rested. Semi-rested, anyway. We got there _before_ 6am for her appointment and the office was dark, the doors were locked, and when we went down to admissions and called the office repeatedly, only the voicemail answered. We waited two hours for before she was called for her appointment.
It didn't get easier from there; they stuck her five times to get the IV in. My dad, the LPN, is telling them which vein to stick, and they ignore him. Finally, they accidentally poke the vein that he pointed out, and they got the IV.
Then they ask me, "Is she going to be able to lie perfectly still while we do this? It's going to be very painful and we can't give her any anesthesia at all, just a local."
Well, um, ok, if anyone had asked me this question and told me this before we drove five hours, got a hotel room, got up at 4:30am, waited over two hours, and then came into the room, I'd have said "No, I really don't think she can. She's very hyper and I don't know how she'll react without me here." Because, we have to leave the room....we can't be there for the procedure. I tell them that I don't know if she can be still or not. And then we were ushered out of the room and had to wait. My dad said "They not going to be able to do this. She is not going to be able to do this."
All I could say is "All we can do is wait." So we waited. And waited and waited some more. And after a while it became apparent that they were able to do the procedure. They called us in afterward, and she was in good spirits, she was smiling, and they said she'd done very very well.
They also said that her speech originates from the _opposite_ side of her brain that the seizures originate from. So--this is very good news. They can do the surgery and not worry about affecting her speech at all.
She had to wait about an hour in recovery, and then we went up to the room from hell, where she had to lie flat on her back, no moving for 6 hours. And she did _great_. She had her remote, she had cable, she had her shows, and she had us hand feeding her chicken nuggets and fries and sips of water and milk.
She didn't move the whole time. Even after they told us that she could move around, we kind of kept her quiet and still, because we didn't want to have anything happen.
For anyone who didn't already know what procedure she had done, it's called a WADA test, and involved inserting a line into her femoral artery at her hip and running that line to her brain. They then used a short acting drug to put half her brain to sleep, and did memory/verbal testing on the other half of her brain. They might have done both sides, but they got all the data they needed from doing just the one side.
We are home now, she's been a lot more tired than usual (of course), and the site is bruised, but she's doing well.
March 3, 2004
Nikolena came through the surgery well. They opened up her skull and implanted some 90+ electrodes on the surface of her brain on frontal, temporal, and parietal lobes of her brain. They've given her sedatives to keep her quiet and mostly sleeping while her body recovers from this huge ordeal. She is in the Pediatric ICU right now. My parents have managed to get a room at the Ronald McDonald house, and they are staying the night there.
I am sleeping next to Nikolena's bed in the ICU. I'm told I don't HAVE to be here, but I can't be anywhere else. I'm her mom first, and everything else in the world second, and if she wakes up during the night I want to be there for her. She has opened her eyes a couple of times, and she's said "I want water", then promptly passed out again. Thank goodness she DID pass out again, because she can't have _anything_, water or anything else, until tomorrow. Her face is swollen, but her color is good. When we were able to see her right after surgery, her lips were pink and her color was good even then. I was VERY relieved. I don't know if anyone knows how scared I was that she would not survive this surgery.
In fact, THAT is the reason I fought the _idea_ of surgery for so long....Because I was convinced that she would die during surgery. I was very very scared. And actually, we aren't out of the woods yet. We are only in the very first stage. She now has hundreds of electrode wires coming out of her head. She is hooked up to a computer monitoring system, and she will be monitored for 7 to 14 days Once they have the source of the seizures narrowed down to a small enough area they will go in and do ANOTHER surgery--this time to remove the electrodes and also remove the section of her brain that is causing the seizures.
My mother will be staying until Sunday, and then has to go back to work. My dad will be staying another couple of weeks, but won't be able to stay the entire time we are here, as he had planned. He'll be leaving on or about March 17. If Nikolena does well tonight, and is still doing well in the morning, she will be moved to a room on the pediatric floor. I am hoping for the best. I know that a lot of people want to send cards, but I won't know her room number until tomorrow at the earliest. I will email it when I know. Thank you all so much for your many many prayers. I know that they helped. Nikolena would thank you too, if she could. I am exhausted now....I am going back to be with her.
March 5, 2004
Nikolena was moved from the ICU to a regular room yesterday, and thank goodness, we have a private room!!!!! She was put back on solid food last night too. All she wanted was mashed potatoes and gravy, so my mom got her some and she ate almost all of it. The Ronald McDonald House is UNBELIEVABLE. It's just _beautiful_. I'm going to take pictures and put a whole RMH page on my webpage, and give links to make donations to them. Btw, that deal with saving pop tops from cans is the real deal. They really do collect them and use them. So if you have some, donate! Nikolena should get the drainage tube taken out of her head today.
Since the surgery she's had this little tube and bulb leading out of her head that's been draining off blood and cerebral fluid. Well, that's about stopped draining, so they are going to remove it. This will be my first look at her without hair, and my first look at the wound. I want to see it and DON'T want to see it....I just need to get it over with. She's still in loose wrist restraints to keep her from touching her head. She has no idea yet that she's lost her hair. She just thinks she's covered in bandages like last time. She's having some pretty bad spasms of pain....they gave her two doses of morphine into her IV yesterday.
I brought in her presents and her pajamas and all today. She opened her presents and she was thrilled with everything!!! I put all of them on a little table at the foot of her bed so she can see them all, and when she wants something, I bring it to her. She's still very drained and tired though, so she's not playing much. I simply cannot thank you all enough for everything all of you have done for her, and for me. I am deeply, deeply grateful for your support, your prayers, your gifts, your funny frogs, your cards, your stories, your calls and your mails.
I appreciate it more than you can ever, ever know.
Ok. I think that's it for now. My parents are coming in at 2pm to give me a break, and then I'll be back tonight to spend the night. I'll log in for a bit after she's asleep, probably. Right now she's playing Mario with a volunteer. Love to all of you. And please keep the prayers coming...she's less than halfway through this ordeal right now......
Saturday, March 6, 2004
They took the drainage tube out of her head yesterday and changed the dressings. Unfortunately, I didn't get to see her without the dressings. My parents were both there. I was back at the room, sleeping, because I had had the morning to 2pm shift with her and then the 8pm to 8am shift. They tell me that the wound looks good. Unfortunately her eye is swollen shut this morning, and I can see some bruising starting. The dr warned me about this, so it's no surprise; it's just not pretty. It will get worse, apparently, as the days go by. I took some photos of her last night before she went to bed--when her eye was still open. I am going to keep kind of a photo journal of all this, if for nothing else but just for me. Thanks for all your thoughts and prayers.
March 7, 2004
Nikolena woke up yesterday with her eye swollen shut, but by the end of the day it was opening up again. She had two seizures, big ones, last night, and I hope they got lots of data from them. We'll see what happens today.
She is weak, and unfortunately, seems to be getting weaker, but we are coaxing food into her, giving her popsicles and supplements, and everything we can. I'm going to make popcorn for her this afternoon.
She's finally started being nicer to me too. From the first, she's blamed me for being here and every needle stick and every bit of pain on me. She's been scratching me and biting me and telling me she doesn't like me anymore and doesn't love me anymore, the works. I've been VERY patient, and I tell her things like "Well, it's a good thing I love you enough for both of us. Because I still love you. You're still my baby, my angel, my best friend, and I love you."
I KNOW I've GOT to be getting through her pain and anger. I tell her I love her about twenty times a day. The other night she was in pain and the nurse got her some morphine. It made her skin blotchy for a few minutes and I was checking her out, rubbing her skin, and she said "My heart is broken". Well, that was it for me. I just started to BAWL and I said "My heart is broken too!!!" I went over to the loveseat and sat down and hugged my pillow and cried for about 10 minutes. She finally said "come here....come here...." and then she tried to hug me with the restraints on.
This has been so completely draining, physically and emotionally. Thank you for your continued prayers for my baby....we need them.
March 11, 2004
Nikolena news> (News in general) My mom broke her foot this week. My dad drove home early this morning to take her to the doctor to get it casted. He's then going to bring her back down here to stay with us. I've been sick with food poisoning for the past two days, throwing up, the whole bit. Fun. So I was up for 24 hours being sick _and_ taking care of Nikolena, then I was up for 24 hour MORE, because the doctors wanted to do a TOTAL sleep deprivation on her last night. Not just keep her up late--Keep her up ALL night. Oh yeah. I was thrilled with this prospect. But we did it . We stayed up the entire night and she didn't have one seizure. Now I'm headed back over to Ronald McDonald house to take a very fast shower and put on some clothes that haven't been slept in for two nights. Ugh. Oh, they changed the bandage on her head this morning. But it looks _good_, really good. The incision is clean, there is NO blood, NO sign of infection, NO redness, no swelling, nothing. It looks great. Now if we can just get her to have some seizures so they can get the data they need for this next surgery, we'll all be happy campers.
March 12, 2004
She finally had another seizure today. It was a BIG one.....a grand mal, which is a type she hasn't had in YEARS. But thankfully it only lasted a few minutes. Still, her body is sore from the convulsions and it knocked her out for several hours. We gave her some ibuprophen about two hours after the seizure, when she came around for a few minutes, and then she went right out again. So again, we're just watching and waiting.
My parents got back....my mom is in a wheelchair with a broken foot and my dad is sick with sinusitis. He wanted to stay with Nikolena tonight, and I convinced him to go back to the Ronald McDonald House and sleep there with my mom. He needs the rest.
I have pictures--I'll put them online soon. Actually, she's still _quite_ beautiful without hair!! The incision is the only shocking part. But she looks good bald. If when she's a teenager and she wants to shave her head, I'll just say, "Sure honey. You looked great bald after your surgery. Want me to help you do it?" *smile* Actually, she really really does. She looks beautiful. ;-) Well....that's all I've got for right now.
March 15, 2004
Sorry I haven't posted in a few days. I just have not had a lot of time to be online. When I'm not with her, I'm trying to catch up on my sleep. Last week was spring break here, so there were NO volunteers to be found anywhere in the hospital. So it was hard to get out of the room for even a moment to go get ice or get a can of soda from down at the end of the hall.
Nikolena is doing great. She is eating like a lumberjack……All she does right now is lie in bed and eat, from 8am until 10 or 11pm. She has games and colors and paints and toys and all kinds of things to do, but she is constantly HUNGRY!! And this is GOOD, because after all the weight she's lost in this past year, I am SO happy to see her eating good. I can't wait to see how much weight she's gained. Her clothes will finally FIT her again, instead of just hanging off her!!
The only caveat to all this, is she hasn't had another seizure. And the doctors are needing one more seizure for the data before they can do the next surgery. She's been off her seizure meds for more than a week now, and we are getting into dangerous territory, because if she stays off her meds too long, there is the danger that she may go into Status Epilepticus, which means basically a seizure that will not stop, and will increase the brain damage considerably.
So tonight we are doing another sleep deprivation. We will stay up all night long, get a stack of movies, order pizza, and have a big no-sleep slumber party. Am not really looking forward to this……
March 16, 2004
Well, we had our overnight sleep deprivation. We watched movies, ordered pizza, had a sponge bath, changed the bedding, did "homework" pages from school, colored, hung up her cards and poster that friends have sent; stayed up until 6am, but NO SEIZURE!!!! ARG!
We slept for about six hours, from 6 am til noon, and my parents are going to keep her up all day long too--no naps. Hopefully she will still be tired enough to have one. This is so backward. At home, when she is ON her meds, she has more seizures than she's had here! So I guess the way to NOT have seizures is to lie in bed for a couple of weeks, eat practically 20 hours a day, watch all your favorite shows on TV, and play video games. heh.
I would be more amused than this, but they really need the data from one more seizure in order to do the surgery, and time is running out on how long she can stay off her meds. ;-\
March 19, 2004
I'm tired.
I wanna go home.
I wanna sleep in my own bed.
I miss my dog. I miss my cats. I miss getting to hold my daughter in my arms while she sleeps. I can't hold her while she's tied to the hospital bed.
I want to sleep a whole night without anyone coming into the room to do things.
*sigh*
We've just kept Nikolena up for 20 hours straight. The doctors are using sleep deprivation, flashing lights, and hyperventilating to try to make her have a seizure. So far, none of it has worked.
She is still eating every 3 to 5 minutes though! The steriods she's on are making her all moon faced and hungry constantly. She has _really_ chunked up. I'm glad I have clothes at home that were too big for her when we left! She's going to need them. I've NEVER seen anyone eat like this before. She'll polish off a whole tray of food and then turn to me and say "Mommy! Cereal!" My mom asked me how long they are going to keep her on the steriods. I don't know. All I can hope is that they take her off them by the time we go home. I DO have the freezer and cupboards full of food, but at her present rate of food intake, it'll take her roughly two hours to empty the entire kitchen!!
Actually though, I'm thrilled to have her chubby again. The whole weight loss after the trauma she went through last summer was just very painful for me. It's great to have meat on her bones!
I just wish she would have this last seizure so that they can schedule her surgery and we can get on with things. Things like, getting ready to go home. She tells me every day "Mommy, I wanna go HOME" and all I can tell her is, "Me too, baby, me too".
I am hoping that the 20 hours of sleep deprivation will bring on this last seizure. At home, if we've gone out and had a really big day; shopping, eating out, going to a festival or a parade, etc., if she has a seizure it happens just after we get home....after she is back in her comfort zone. So I'm hoping now that we are letting her sleep and making the room dark and quiet again, that she'll go ahead and have it.
Well, I'm going to get back in there with her. I'll post more when I have more.
*HUGS* to everyone.
March 22, 2004
Still no seizure. The doctors say "wait it out"....they _need_ the data from this last seizure to do the second operation.
We're exhausted. I get no sleep in the hospital with Nikolena, due to the nurses coming in constantly and disturbing us. I get no sleep at Ronald McDonald House, because apparently many families don't realize that some parents spent all night with their children in the hospital, and they make no effort to be quiet or keep their children quiet at ANY time of the day or night. Kids are running up and down the (tile) hallways, kids yelling, parents yelling at the kids, doors slamming..... I'd get more sleep in the middle of the ball pit at the McDonald's playland.
Nikolena is still eating like Marlon Brando on a binge (the steriods make her constantly hungry), and I am getting REALLY tired of feeding her 25 hours a day. She will eat a full tray of food and then DEMAND more food!! Fortunately, the docs say that they will start to taper her off the steriods, so this will gradually get better. She's certainly gotten plump though!
Here are some wonderful pictures of how very plump she has gotten:
March 25, 2004
Nikolena is taking a turn for the worse. She still hasn't had a seizure, but that's the least of our worries right now. They've begun to wean her off the Decadron (sp?); the steriod that they've had her on since the first operation.
Last night about dinnertime the side of her head started swelling like it had right after the operation, and she was in a lot of pain.
She's weak on that side, and this morning when she woke up, she was still in pain, even more so than last night, and there was more swelling. I dont' like the look of her skin, either. She is flushed and clammy at the same time. They've given her pain meds, but there is something wrong here. You don't start swelling again THREE weeks after the operation just out of the blue.
We have made our concerns known to the neurosurgeon and the neurologist, and the neurologist is suggesting a CAT scan. We NEED to see what is going on here.
She's also noticeably weaker all over, than she was even yesterday morning. I'm not liking this.
March 27, 2004
Just wanted to post quick and let you know that Nikolena is doing slightly better. She had a CT scan yesterday, with and without contrast, and they found nothing abnormal. As a safety measure, they've put her on Keflex (a very strong antibiotic). The swelling has gone down some, but she is still having a lot of pain (which before this, she wasn't having.)
My parents are both here right now...my dad had three days off and came down for them, but he goes back this afternoon. We are _still_ waiting on that last seizure. The resident from neuro who came down at 6am this morning to check on her told me that we will just "keep on keeping on" til she finally has a seizure.
Nikolena is still weaker than she was, and just not as "up and at em" as she has been....but I also think that this overly long hospital stay is really wearing on her. Being in bed since March 3, I don't know HOW she's handling it as well as she is. I'd be going stir crazy. But she has been _so_ patient with all that she's had to put up with....The restraints, the bedpans, the spongebaths, the constant meds, the inability to get out of bed and move around, and worse, the constant interruptions of her sleep all day long and all night long by the nurses.
Her muscles are drawing up and losing their tone, but we are doing everything we can to help her with that. We are doing range of motion exercises on her several times a day, and when I give her her baths, I give her a full body massage as well. That helps, but it sure doesn't make up for being able to get up and run around.
March 28, 2004
Nikolena has continued to slide further and further downhill...she's been in pain, not eating, sleeping all day. After nearly 24 hours of complaining to the nursing staff and doctors I finally got them to remove the bandages on her head and it revealed that she has an infection. It is deep in her head where the grids are and was leaking pus out where the wires are coming out.
They are doing emergency surgery in the next hour or so to take the grid strips out and electrodes out and will immediately start her on IV antibiotics and do cultures to find out what KIND of infection this is so that perhaps they can isolate it to one antibiotic that will work on it.
This also means that they will not be able to do the resective surgery that might have ended her seizures. They simply do not have the data to do it, and with infection in the brain, they cannot do it.
We are in a dangerous situation with infection in the brain....apparently we will be here quite a while longer while they deal with THAT issue.
Please pray for her. She will go into surgery at 8pm. It will last approximately 4 hours. Please no one call the room, as we will probably not be there and I am not in a state of mind where I can speak to people.
Thank you for your prayers, lighted candles, whatever you can do.
Please pray we get through this. I need my angel baby.
March 29, 2004
Nikolena made it through the emergency surgery last night. They were able to save the section of skull that they'd had to take out in order to gain access to her brain. There was some question on whether the bone would still be viable, or whether the infection had affected it too badly. Fortunately, they tell us it was still viable.
She is still in ICU and will be for several days. They've removed the electrodes and grids, but she is still fighting off a very dangerous infection. So far she's sleeping, taking sips of water, and sleeping more. She is allowed to stand and walk, but she's gotten so weak, there's no way she can do either on her own. She will need lots of help.
After she leaves the ICU, we will remain in the hospital for two weeks or more, while she heals and continues to fight the infection. The resident that came in this morning said that she will likely go home on IV antibiotics, which means I will need to arrange a home health nurse.
She's not out of the woods yet. She is still in a very dangerous, precarious situation and we need all the prayers we can get.
Please don't call the ICU, as she is resting most of the time, and truly, I'm not able to talk about this yet. Writing it for you is easier.
I may not be online for a few days while we get through this, but I will keep you updated when I can.
March 31, 2004
Nikolena is doing a little better. They took ONE of the drains out of her head today. She still has one in (draining blood and cerebral fluid). There is still swelling, and she is still very weak and has very diminished lung capacity. The good news is she started eating better today, and I actually got her up for a walk this evening.
I didn't have slippers for her, so I called the nurses desk to ask for some of those slipper/socks they give out to all the patients, and they came up with a perfectly _adorable_ pair of blue fuzzy bootie slippers with white hearts on them. So so so cute. (She has slippers, but all of our stuff had to be packed up when she left the 4th floor room, and I don't have any of it in the ICU).
So we took a very slow walk around the ICU, looking at the pictures on the walls and looking out the windows from the 10th floor. She was very shaky; this is the first time she's walked more than a couple of steps since March 3! But she did great.
I _had_ to get her out of bed--she had herself convinced that she was trapped in it. Can't much blame her there.
They put in a PICC line today, which is a very durable IV line, and she will go home with this in so that I can continue to administer IV antibiotics for 6-8 weeks after we go home.
And we MIGHT just get out of the ICU tomorrow and get to go to a Peds room on the 4th floor again.
SHe's definitely not out of the woods yet, but she IS showing signs of improvement.
And I got to HOLD MY BABY tonight for the first time in a month!!!!!!!!! After the walk, I got her to sit up in a chair for a while. She wanted to watch Alice In Wonderland, so I put that in. But I was sitting there looking at her sitting in the chair, and realized she looked SO alone sitting there....so I got up, got her to stand up, and held her in my arms for a long, long time. She's certainly fatter and heavier, but omigod it felt SO good to hold her. I've missed that so bad it hurts. And of course I took every opportunity to plant little kisses on her chubby cheeks and whisper in her ear how much I love her too.
April 2, 2004
April 2, 2004 Nikolena has been moved out of PICU and onto the pediatric floor again. I am not entirely happy with the situation, because we are in a shared room, but that's another story entirely.
She is _much_ more herself, laughing, playing jokes, acting up. The surgeon says that we will likely go home the first part of next week. Thank goodness. I haven't gotten any real rest since we got here. All I want to do is go home and sleep for a week--but instead I'll be going home and administering IV antibiotics to Nikolena every six hours. Noon, 6pm, Midnight, 6am, repeat.
Still, I will be SO GLAD to get home.
April 6, 2004
We're finally home. Nikolena was discharged today at noon. We are exhausted and more exhausted.
Met with home healthcare right after we got home and they set us up with Nikolena's antibiotics. I learned how to administer the antibiotics by the PIC IV line that's still in her arm, and she'll be on them for the next five weeks. So she's tied to this IV machine box 24 hours a day, for the next 5 weeks. At least it's portable. Guess she's not going back to school in 3 weeks like we thought.... Of course, that was according to the 'old plan' that was given us before the infection and the second surgery.
We have an appointment to get her stitches out next week, and I will find out more then. Right now, I'm just trying to keep her from falling down and jarring her head. There are only four stitches holding that bone plate in....so I'm absolutely freaking out at the possibility of her falling.
The dog and cats are thrilled we are home. Nikolena is thrilled to be home. I am thrilled at the prospect of sleeping for an entire night without anyone barging into our room and turning on lights repeatedly. One night some aging PCA actually tried to take MY vitals!!!! I had to point out that Nikolena, the bald one with the bandage on her head and IV in her arm, was the actual patient. It was crazy.
I've got an ear infection and what feels like a permanent headache. Need to see the doctor myself...but that will probably wait.
Going to bed now....
April 15, 2004
We got home a week and a day ago, but had to go back to Gainesville yesterday to get Nikolena's stitches out. Was a very long day--5 hours there and 5 hours back. The neurosurgeon wants her back in a month for another CT scan to make sure the bone plate is still viable. He says only "time will tell" if it's going to work. This isn't something they told us about before she was discharged. I guess they only give you so much news at a time. Still, I'm not pleased about being given the impression that the bone plate was FINE, and then now finding out that it may not be. If it is deteriorated more by the infection, this could mean two more surgeries for Nikolena. And this is JUST not what we planned on when we went into this.
She's still on IV antibiotics and will be for another 4 weeks. Fortunately, she's doing very well with keeping the IV machine with her at all times. I thought it would be more of a battle, but she's accepted it without complaint.
She's getting visits from the home health care nurse twice a week & gets blood drawn for her labs at both visits. Then once a week she gets her dressing changed. I take care of the day to day changing of the antibiotic bags and flushing the IVs. She cooperates with me so well, but not so great with the nurse. She's just had too many nurses and doctors poking at her. She's tired.
Her hair is starting to grow back, but she'll be wearing hats for a while yet to keep the sun off that incision. Apparently it will burn very easily, and we don't want that.
I asked the dr about when she might return to school, and it's at least 4-5 weeks away. They don't want her going back to school until the antibiotics are finished and the PICC line is out. And that will all depend on if this infection is gone by then.
April 19, 2004
I am getting more discouraged by the day.
Nikolena seems as weak to me as she did when we brought her home from the hospital. Her appetite is diminished, so I am feeding her many small meals and snacks a day. The least little exertion on her part though, leaves her with both legs trembling uncontrollably.
We've found in the past couple of weeks that she's forgotten many things since the surgery. She doesn't remember how old she is. She doesn't remember her teacher's name, or what town we live in. And I'd been very proud of her a few months ago, because she had finally learned all the holidays and what order they come in, including how the families birthdays fit in around the holidays. Now she knows none of that. I asked her when Christmas was and she told me "Last week." Valentine's day? "Last week." She simply doesn't know, so she answers "Last week" to everything. She doesn't remember her birthday either, and she had known when that was for around a year.
Physically, I'd mentioned before how weak she is. Her right foot is turning in far more than before, and her muscle tone is almost non-existant. She is going to need quite a bit of physical therapy to recover from this...if she CAN recover completely.
It is just so disappointing.....we went into this thinking that it would HELP her; and coming out of it, all we have is the knowlege that she almost died and that now she has many deficits that she didn't have before. She's worse off than when we began.
And on top of that, she's been through pure hell.
June 11, 2004
I apologize for the long break in journal posts. Nikolena is fortunately regaining her strength extremely well. She is running and playing again, and she no longer has to endure the 24 hour a day antibiotics or the PICC line. All of that is gone, thank goodness. The Home Health nurses were wonderful to us, and helped us through every step with true caring and concern.
Today we traveled to Gainesville once again for a meeting with her neurosurgeon. The trip was as miserable as usual, and I am really hoping that in two months when we go back next, I'll be able to make it a two day trip.
Doing ten hours of driving plus going all over this HUGE hospital complex is just exhausting. My body hurts SO BAD for DAYS afterward. Right now it's even worse for me personally-- I have an ear infection, two broken toes, and I've just had a mole removed from my nose. I am NOT in a mood to travel 10 hours in one day!!
The good news: Nikolena's CT scan looks good. There is no fluid, there is no swelling, there is no sign that anything is wrong. We also had lab work done. I'll call on monday to find out the status on that.
Nikolena herself, however, acted absolutely HORRIBLE for most of the day. She was really FINE for the trip up there, but once we got there, she started her behaviors and they escalated through the day.
Her autistic behaviors are increasing. She is getting prone to waving her arms and screaming YI YI YI YI YI YI YI YI YI YI YI in public places, in addition to other interesting behaviors such as repeatedly hitting herself in places that she is in pain. If her head hurts, she'll hit her head repeatedly. This is my clue to give her Tylenol. If her neck hurts, she hits it repeatedly. Etc. I shared this with the neurosurgeon.
Other cognitive deficits that I've found aside from her not knowing her age, is that she cannot count anymore. At all. She used to be able to count to 12 to 15. She knows none of the alphabet anymore. She used to be able to say the alphabet up to letter G. I shared all of this with the neurosurgeon, while she screamed and fought me and generally threw a nuclear meltdown fit during our conversation.
The neuro asked me what kind of therapies she is currently getting and what I am doing for her, and I informed him that she is getting physical therapy, occupational therapy, and speech therapy through her school. I also work with her at home, trying to build her cognitive skills. I also filled him in on the fact that she is seeing her orthopedist this coming Tuesday for clinic, and will be seeing her primary care physician on Friday.
He tells me that I am doing everything possible for her and should simply keep doing what I am doing.
He tells me that the cognitive things she has lost, we will simply have to wait and see. This is not terribly helpful to me. I tell him that in two months since the last surgery, I SHOULD have been able to teach her something as simple as her AGE. She STILL does not know how OLD she is. And the information doesn't stay with her.
I am afraid that by agreeing to this surgery, hoping to stop her seizures and therefore hopefully boost her cognitive abilities, I have set her back indefinitely.
Where her mental age was generally 3 yrs old, 4 yrs old in some areas; now I am seeing behaviors more appropriate for 2 and 3 yr olds.
Here are two pics that give a lot of visual detail of what she's had done and what is happening. Not for the faint of heart.
HISTORY
In addition to epilepsy, Nikolena has cerebral palsy, severe developmental delays, speech delays, and orthopedic problems. She attends a school for special needs children in the next county.
Nikolena has been on anti-seizure medications since her diagnosis of epilepsy at age 3, but not one of them has ever worked for long. We've gone from neurologists in Minnesota to neurologists in Florida, and finally had to come to the understanding that the neurosurgery that can be done for epilepsy was the logical next step. In the past year, her seizures have gotten worse, not only in length and intensity, but new KINDS of seizures have appeared. Added to this, she started experiencing vision loss at the onset of some seizures. All this, while she was on THREE different anti-seizure meds at the same time.
Then to make things even worse, the neurologist she was seeing for a short time prescribed a toxic dose of Dilantin for her. So she began having seizures every day, gradually lost her ability to speak, and lost the ability to walk.
The fact that he overdosed her is not surprising, in light of the fact that every time we wound up in the emergency room with another seizure, the neurologist's choice of treatment was either raise the dose of medication, add a new medication, or both. I was very uncomfortable with having her on so many meds, and said so, but some physicians have that "God" complex, and I'd say this one was an overdeveloped case of it.
Back to the surgery though. Nikolena's primary care physician (who does NOT have a God Complex, thank goodness!!), referred us to Dr. Carney at Shand's Children's Hospital in Gainesville. After long waits for appointments and many phone calls for scheduling, she was admitted for Phase I testing on October 6, 2003. This involved a 7 day admission, which included constant EEG and Video monitoring. She was taken off her anti-seizure medications and all seizures were monitored and recorded. She had a total of 9 seizures in a six day period of time. The seventh day she had an MRI. Then, exhausted and back on her meds, she was released from the hospital.