Ready to Go Home!

In  a lot of ways  this week has  dragged on, but in a lot of ways I can't believe it is Friday already.

On Wednesday, my last post mentioned attempting to redo the "Ictial" test on Thursday.

Wednesday night I kept Cheyenne up until midnight as instructed. But at midnight she was very ready to go to sleep. This time, I slept in the bed next to her to make sure she was ok and wasn't scared. Fortunately, she slept very well all the way until 6:00am when the nurse came in to wake us.

A little before 7:00 she was sitting up watching Frozen and I was sitting on the chair in the corner checking my emails. All of a sudden she started calling out for Nathan as if he was here or in the next room. When I said "Honey, Nathan's not here" and looked up at her I could tell she was having a small seizure. It was what Kevin and I call a "misfire" but the doctors seem to call it a "mini seizure". It's where she is responsive but isn't really coherent. She will respond to pain stimuli and will speak but it's usually gibberish and when it's not, it is not accurate (like saying my name is Randy or calling for Nathan when she knows he's not here). This only lasted a couple of minutes and then she was back to her normal self. I never thought I would say a seizure was "cute" but as far as seizures can go, I'd say that was the cutest or sweetest I've seen since she was calling out for her big brother.

Even though she can't understand their questions well enough to confirm, the doctors suspect she has what's called an Aura just prior to a seizure. This is something that lets a person know a seizure is about to happen. For some it is seeing a bright light, for some, it's getting dizzy, etc. She doesn't understand well enough to answer their questions appropriately. But if there is an aura and surgery does not turn out to be an option for her, it may make the idea of getting a seizure dog something we consider more seriously. They tell us that the dog can sense the aura and either bark to alert someone nearby or even push a button that would stop the seizure (the button would trigger an electric impulse to the brain).

As I mentioned on Wednesday, they were scheduled to reattempt the Ictial scan yesterday. She had the mini seizure about 7:00. Unfortunately, that was too early and they weren't prepared yet. They came in about 8:50 to start setting up for the test. To set up they have to clean her IV port with a sterile wipe, then flush the IV to ensure it is working properly and then they attach the syringe with the dye to the IV port and tape it down to her arm. They need this done so that they can very quickly inject the dye as soon as a seizure begins.

As they were coming in to prepare, she started freaking out at the idea of them messing with her IV. She is always scared they are going to hurt her or stick her with a needle. As she was in the midst of her freak out, she started having another seizure. This one would have been the perfect one to capture for the test but unfortunately, they hadn't prepped the port yet and it wouldn't have worked if they tried to inject it. So we had to wait.

On Tuesday, we missed the window by 10 minutes! So for this one, I asked them to monitor until 3:00 to give us extra time and they agreed. We sat and waited and played games and waited and watched movies and waited and nothing happened. Around 1:00 we decided to have her take a short nap in hopes that the waking up process would naturally trigger a seizure. We let her sleep for about 45 minutes and then woke her up and waited some more. Once again, nothing happened! At 3:05, we had to call it and the nurse removed the dye and cancelled the scan. And 15 minutes later, Cheyenne had another seizure! Fortunately, it wasn't too bad and only lasted about a minute or two. But to make matters worse, becuase Cheyenne would have had to be sedated if we were able to do the scan, she wasn't allowed to eat or drink anything all day and she asked me many times throughout the day for a drink and a snack and it broke my heart to not be able to give it to her - and then that was all for nothing as it turned out. Oh my gosh, I can't begin to tell you how frustrated I was. I wanted to cry. How is it possible that both days, we missed the time period and on this day missed it by THIS much on BOTH ends of the test. It isn't anyone's fault but man was I ticked.

Shortly after this, the doctors came in and assured me that even though we weren't able to get that one scan, they had a lot of data between the other scans and EEG seizure readings. We are all hopeful they have enough data to make a clear decision regarding next steps.

The remainder of the day and night was uneventful. Cheyenne got visited by her aunt and uncle and slept well last night. She was given once dose of meds last night and another this morning. She ate well at breakfast and the doc has cleared her for discharge.

Please continue to pray as we wait for them to review and analyze all the information. They will call us in a few weeks to set up an appointment to get the results and determine next steps.

FIVE MINUTES

Have you ever stopped to think about the significance of small timeframes...like five minutes? In most cases, five minutes is not a huge deal. If you show up someplace five minutes late, it's usually pretty forgivable. If someone is five minutes early to your house gathering, it's usually an aceptable surprize. But in the land of seizures, specifically Cheyenne seizures, five minutes is a HUGE deal. Five minutes is the critical point for when a "rescue med" must be given to stop the seizure.

When we are with Cheyenne at home, we have to always have a Diastat injection available. Diastat is Cheyenne's rescue medication. We have one at home, one at day care, one at school and I carry one in my purse whereever we go with Cheyenne. It's very similar to an Epipen for allergic reactions with one big difference - it has to be administered rectally. Yep, it's a suppository! Honestly, at first I was horrified at the idea of explaining it to the daycare staff and school teachers, but fortunately this is a common practice and noone was surprised or mortified - except me. :) Fortunately, we have never had to admisiter a rescue med and fortunately, here in the hospital, any rescue medication needed is given through her IV.

Cheyenne has what are called "absence" seizures. To an outsider, you wouldn't even know she was having one. In fact, you would probably think she was just being disobdient. She stares off, even if you make eye contact with her you can tell she isn't really making contact with you. She doesn't respond to questions, or if she does it's through gibberish words, and she doesn't respond to any type of pain stimuli (like slapping her hand or pinching her forearm). And fun fact - some nine year old kids stare off to otter space for no reason! So when we notice something, we have a standard procedure where we call her name, then blow on her face, then slap her hand (doctor's orders). When she doesn't respond to any of those, it is a seizure. She has been on meds since we discovered this in July of last year, so those are the only behaviors we have experienced. That's why we believe they were not discovered in China. It's also possible she was not experiencing seizures regularly in China because the neurologist told us they often don't start until a child is between the ages of 7-10.

Monday night, I was publishing my last post while we were staying up until midnight. I was instructed to keep her up until midnight and to wake her up at 6:00 in hopes that a seizure would occur on Tuesday. So I'll give you the update from where we left off...

Monday night was a rough, rough night. I got Cheyenne tucked in around 12:15am after she finished her Paw Patrol movie. Then I settled in for what I had hoped would be at least 4 hours of restful sleep. I knew Cheyenne and I were both exhausted because neither one of us slept Sunday night due to nervousness about her stay this week.

The never ending night started about 45 minutes later when Cheyenne woke me up to go potty. She needs someone to take her to 1) ensure she doesn't fall. She is considered a fall risk because of her medications being withdrawn 2) to make sure she doesn't have a seizure and 3) becuase she is literally tethered to a computer in the room. Since she is being monitored by the EEG readings around the clock, her EEGs LEDS are connected to a small box that is connected by a super long wire which is connected to a computer attached to the wall. This long wire is enough to move around the room and bathroom but it is JUST long enough to reach the toilet in the bathroom.

So I took her to the bathroom, and tucked back in bed. Then about an hour later, she needed to go potty again. So the process is repeated...except this time, when I went to get her back in the bed, she started having a seizure. If a seizure occurs we were instructed to push a two button clicker as soon as possible. One button alerts the nurses and the other notes the time and date on the EEG reading for later reference. I pushed the buttons and right away two nurses came hauling ass into her room. By this time, Cheyenne is twitiching the whole right side of her face, which is new. Then her right foot starts to twitch badly (also new). She wasn't responding to anything we were saying or doing and at one point she was so still it was hard to tell if she was even breathing. She went completely stiff with arms and legs fully extended and straight like a board...then she started convulsing (all so new). This was all so scary to watch. At one point the nurse put a pulse/ox on her and her oxygen was down to about 75% so she had to give her oxygen. At one point, Cheyenne seemed as if she was trying to push the oxygen away, but the EEG tech who was standing between our door and the EEG monitoring room shouted that she was still in it. Since a rescue med is to be given after 5 minutes one nurse went running off to get the rescue. The EEG tech kept hovering between our two rooms and shouting the time lapse...by time the nurse got the med and admistered it, the seizure was about six minutes from the time I pushed the button. We found out from the doctor yesterday that the seizure lasted in totality about NINE minutes.  So it took about two minutes or so to stop the seizure once the med was given.

Once the rescue med is given, it slows the brain down so much that the child typically sleeps for hours afterwards. The nurse told me I should get some sleep - yeah right! I was scared and coming down off of the adrenaline rush and scared and emotionally exhausted and did I mention scared? I sat in the chair and watched her sleep and cried silent tears for about 15 minutes. Then I sent Kev a text to call me when he wakes up and then I attempted to sleep...for about 20 minutes until Cheyenne woke up and yet again needed to go potty.

I helped her to the potty and back and then she started vomiting. After she vomited, she would try to sleep for about 15 minute, then sit up and seem like she was going to vomit again, but didn't, until about 4:30 when she did vomit again too fast for me to grab the bucket, so she got it all over herself and the bed. The nurses came in to change the bedding while I changed Chey. This went on until close to 5:00am. Then she was finally worn out enough to sleep. So then we both slept until the nurse came in at 6:00 to wake her.

The testing that she was to do yesterday and tomorrow are the same scans. The difference between the two is that one is supposed to be done with dye injected during a seizure just before the scan and the other is supposed to be without a seizure occurring with dye. Then the doctors compare the two scans and the dyed areas to see the different areas that are impacted. Yesterday, the plan was to get the scan WITH the seizure. Around 9:30 the nurse came in to prep her IV with the special dye that has to be injected within 20 seconds of a seizure starting. Then we all just sat and played games and watched TV and waited for a seizure to occur. Her scan was scheduled for no later than 3:30. The dye was to be injected within the 20 seconds of a seizure and had to be injected by 2:30 at the latest because the scan required it either way and it takes time to do its thing before the scan. We waited and waited and 2:30 came without a seizure. The nurse injected the dye and left the room. Then about 20 minutes later, the seizure came...but unfortunately it was too far after the injection to perform the test they wanted to do. Instead they did the scan without the seizure and we will try again tomorrow to get the scan with a seizure. So tonight we are back to staying up late and getting her up early again tomorrow.

Last night we both slept well and today she has been doing well. She has had several seizures but they weren't too bad. She had a "PET" scan this morning. She did great with it.

Overall, she's in good spirits. Keep praying and pray specifically that she has a seizure tomorrow between 10:00am - 2:00pm.

Praying for a Seizure

Many people don't know this, but China now only adopts children with special needs. So when we made the decision to adopt from China about two years ago, we were asked to complete a Medical Checklist. This checklist is a list of all possible diseases, syndromes or ailments a child may have when adopted from China. We met with our pediatrician and learned as much as we could about each item on the list and checked "yes" or "no" next to each item. On one hand, this felt so wrong because with birth children, you don't get to say "no" if they happen to be born with a chronic illness or disease. It also felt wrong because some of the children overseas may be so ill, they won't live long enough to be adopted unless someone says "yes" to them. But on the other hand, adoptive parents have to know their limits. And in our case, we had other children in the home to consider. Adopting children from hard places has a lot of trials and tribulations without taking on more than you feel equipped to handle. All agencies make this very clear as you go through the long adoption journey. They also make it very clear that while you will not get matched with a child unless they meet the criteria you've outlined on the medical checklist, it is impossible to completely know an orphan's medical history. Additionally, China does not have access to the same level of medical testing we have in the States. Therefore, it is possible and very likely that you will adopt a child with an undiagnosed or undisclosed illness...for us with Cheyenne, this was Epilepsy.

When reviewing the medical checklist, we marked "no" to Epilepsy. We were only aware of the Grand mal seizures that Epilepsy can cause. We were not aware of other types of seizures. Our pediatrician explained that children with Epilepsy tend to have cognitive delays and cannot grow up to drive a car or live independently unless they are seizure free for at least six months. We were accepting to many ailments but ultimately we wanted something "correctible" with therapy or surgery or something "minor" enough to still allow the child to grow up to live independently some day. As much as we love and absolutely adore Cheyenne, if we're being honest, we would tell you that if her file had listed Epilepsy, we would not have proceeded with her adoption. So believe me when I say that it was a true blessing that the file was inaccurate.

When we saw Cheyenne's file, the special needs listed were, "developmental delay" and "Cerebral Palsy". Her file also mentioned that she was allergic to chocolate (but my girl can eat her weight in chocolate with no issues). Upon reading her file and reviewing the multiple pictures and videos they included with the file, we determined (with the help of an International Adoption Physician), that if there really was CP, it was incredibly minor and based on the video, she didn't seem that developmentally delayed compared to her institionalized peers. There was no mention of Epilepsy and no indication of seizures, except for a "Febrile" seizure coupled with a high fever which was dicovered to be a UTI that occurred when she was three years old. When discussing this with Dr. Staat, we learned that many children have a Febrile seizure when they experience high fever. And since the file specifically said there was no seizure activity since then, we all believed it was benign. Everything we examined assured us she would grow to be a healthy and happy young woman.

We met Cheyenne in March of 2017. In late June of 2017 I watched her first seizure. It was so bizarre. I was dropping her off at daycare. She walked away from me without saying good-bye (which was very unusual for her). She started staring up towards the ceiling and rotating in a slow circle while pulling her legs up like a newborn colt learning to walk. When I walked over to her, I made eye contact with her but could tell she was not really making true eye contact with me. She was not responding to anything I was saying or doing. This went on for about two minutes or so and then she finally reconnected with me and yawned and said "Bye Mommy" and hugged me as if nothing happened. Since I had only been aware of Grand mal seizures, it didn't even dawn on me that she was having a seizure. Turns out this was the first of many "absence" seizures she would have.

The second time was much worse. About a month later, we got a call from daycare that no parent wants to get. Cheyenne had what they believed to be a seizure and was being transported by ambulance to Children's hospital. Apparently she appeared to be sleeping at the table but when they went to wake her, she was foaming at the mouth and non-responsive. They cleared the room and started their seizure protocol which included checking for vitals. They said she was breathing so shallowly that they weren't sure if she was even breathing and the director sent another teacher to get the defibrillator paddles. Fortunately, by time she returned with the paddles, Cheyenne was responding enough to avoid having to use them. The ER referred us to neurology. Neurology diagnosed her with Epilepsy and changed our lives.

The first thing Neuro did was order an EEG and an MRI. The EEG was fairly normal but the MRI showed a "lesion" of some kind that the doctor wasn't sure if it was a growing tumor or old scar tissue from a precious injury. The only way to know was to "wait and see". We had to wait three months and then redo the MRI for a comparison. Fortunately the comparison showed no changes (indicating an old injury) but that time was absolutely the longest three months of our lives!

The past year has been spent playing with various medications to attempt to find the right "cocktail". The first med made her crazy mean (like putting a boy in a choke hold on the playground at school for no reason). The next med actually increased her seizures. One couldn't be given until we had genetic testing done (which took months) and one could only be given for a short amount of time because it is very dangerous for girls to start menstruating and eventually get pregnant on it...and the best part, none of these meds (or multiple combinations of them) stopped her seizures.

After a year plus of medication failures, the regular neurology team referred us to the neuro surgery team. We met with neurosurgery about a month ago. The doctor was very thorough and showed us the actual MRI scans and explained what it actually showed was a brain malformation on her left side that was likely caused by a stroke in-utero or at a very early age. He explained that due to the brain injury and medication failures, we only had a 1 - 3% chance of medication ever fully controlling her seizures. Therefore, he recommended being evaluated for brain surgery. He said that if she is a candidate for surgery, there is at least a 50 - 70% chance that she could be completely cured of seizures.

So here we sit at Children's hospital where Cheyenne was admitted this morning for five full days of video/audio EEG monitoring, tests and scans. She's already had multiple other MRIs done including one that told them where all of her cognitive and motor sensors are in her brain. This week they will perform several different tests including one tomorrow where we are actually praying that she has a seizure. If she does have a seizure, they will be able to inject a special dye which will allow them to see all of the brain waves impacted by the seizure. We've removed all of her medication in preparation and they have me keeping her awake until midnight and getting her up at six to purposely deprive her of sleep in hopes to trigger a seizure.

Can you imagine actually wishing for your child to have a seizure? It is so counterintuitive. I mean the last time she had one without medication landed her in the ER and had people believing she was near death. But ultimately, this is what it takes to determine if we will be able to cure her completely. I have to keep telling myself that she is in a safe place. Our children's hospital was just voted #2 in the country which really means they are #2 in the WORLD. At the end of the day, we have to trust that these are the true experts and we all have her very best interest at heart. The goal is to see the seizure in action and determine exactly what happens in her little brain before, during and after a seizure. They will then compare that data with the brain mapping done through the various other tests to ensure that operating would not cause any detriment to her motor or cognitive abilities.

So, as odd as it seems, I'm asking all who are reading this in the next 24-48 hours to please pray for a seizure. Please pray for guidance and clarity for the medical staff involved in evaluating her results and pray for guidance and clarity in the decision we may need to make in the upcoming weeks.