Medical Funds for Kailee Reese
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We created this fund to help the Gibson family in Colorado. They have become dear friends of ours and are just awesome people. Their 11-year old daughter, Kailee, recently became very ill. This fund is meant to help with medical costs and other unforseen expenses as they continue to fight for Kailee's health at Children's Hospital in Aurora, CO.
Kailee Reese Gibson is an 11 year old superstar (really, an amazing little singer) who has recently rushed to Children's hospital for seizures and lethargy. She had flu-like symptoms for about a week, but on Friday December 18th, things changed. Since Friday, Kailee has had multiple seizures and the cause is still unknown. She is now in a medically-induced coma to stop the seizures and rest her body. This is a very special little girl and family and they could use some financial support.
Below is a facebook post written by Kailee's mother, Natalee. Although the post is long, Natalee is an engaging writer and details the onset and progression of her daughter's symptoms very well.
Thank you for reading!
Chris and Lori Duncan...and all of the friends and family who know and love the Gibson family.
A post by Natalee Gibson:
Kailee exhibited flu like symptoms all week prior to this happening. The first notice of anything amiss was a Saturday morning indoor soccer game while, even though she killed it on the field and played with lots of energy and strength, when she would step off the field she complained of having a very hard time controlling her breathing and feeling very taxed. She was particularly whiny about it - at the time I thought it was because she hadn’t played for two weeks and was feeling particularly winded. True to Kailee form, though she complained off the field when it was her turn to go on each time she played with her whole heart. Sometime on that day she had mentioned to Bryan that she had pain that started in her chest and radiated down. She said it very cavalierly, and she was acting completely normal, so it was easy to think it was one of those random one-time pains we all get from time to time.
The next day, Sunday December 13, Kailee complained during church (around 1 pm) that her legs were tired. She also had mentioned that chest pain earlier at church - around 12 pm. After she complained of her legs hurting I was pretty confident we were looking at the onset of the flu. She started running a fever Sunday night and we kept her home from school on Monday. We ended up keeping her home all week from school because we could not get the fever to come down. I treated her all week with a tylenol/motrin mix and while the fever broke a couple of times, for the most part it stayed in the range of 101-103. I think highest I recorded was 103.6 and I think that was on Wednesday morning (possibly Tuesday, it’s hard to remember). For most of the week she had very little energy - she was quite lethargic on Monday and Tuesday particularly. Kailee is an avid reader and she didn’t even have the energy to hold a book. She watched tv, but wasn’t overly engaged. She complained of overall aches, but nothing specific. She had a little congestion, but nothing major. She had a diminished appetite but would eat and kept food and drink down. She ate better when the Motrin would kick in, though she ate far less than normal. She didn’t have any vomiting or diarrhea. I called the pediatrician on Tuesday and we agreed to continue with our course of treatment, and to call if there were any major changes or prolonged symptoms.
By Wednesday I thought she was a bit better. Still tired, still had a fever, but more energy. By Thursday the fever was low - I think the highest read I got was 100 for the day, but again we kept her home to rest. While we had canceled all her activities during the week, she had a very important birthday party Thursday night, and we thought she was good enough to attend for a short while. The party was a sleepover, but we had planned to pick her up after a couple of hours, and asked her to text us when she was ready. The party mom, Kim, texted to tell us Kailee seemed awfully tired and removed from the action at the party, so we went and picked her up - Kailee also texted to say she was ready to go home. On the way home, she cried because she felt so bad. But when she got home she ate her cupcake and then laid down next to me on the couch. We assumed she was taxed from the little bit of activity she had done all week.
Friday morning I went to visit a friend briefly but I woke Kailee up before I left to check on her (about 8:30 am). She was awake and while she still seemed to have similar symptoms of being tired and not feeling great, I didn’t suspect anything different or new. I couldn’t take her temperature because we ran out of the ear covers, so I told her to go downstairs and get something to drink and I would call the pediatrician and get an appt for her. I called the pediatrician on the way to my friend’s house and told them we need to bring her in. I suggested we test for strep at this point as the fever just wasn’t going away (though Kailee has often had strep and said all week she didn’t think it felt like strep. I do understand that strep can present in different ways, so I thought it was time to check). After I left my friend’s house I stopped by Walgreens to pick up ear covers and called Kailee - it took some time to get her on the phone, even after I called Keegan and told him to go up and tell his sister to call me. At the time she said the phone wasn’t working (not necessary unusual, we use cell phones and sometimes they are temperamental with the cell coverage) but I am not sure if that was the beginning mark of the confusion. I asked her why she didn’t go downstairs like she said she would and I was a bit frustrated with her because I wanted her to make an effort to hydrate herself and get better. She told me had some water in her room. I asked how much she drank and she couldn’t say. I told her to just tell me what cup she had, that would give me an idea. She couldn’t describe the cup - I told her we don’t have that many, I’ll know which one it is - just tell me the color. She said 'it’s pink, no blue, no red… Elsa… ugh! why I am I doing this?”
At this point I was nervous and we had the following exchange (this took place about 9:45 am):
Me: What is your name?
Her: Kailee
Me: What is your last name?
Her: Gibson
Me: When were you born?
Her: September
Me: What year?
Her: I don’t know
Me: What is my name?
Her: Natalee
Me: What is dad’s name?
Her: I don’t know
At this point I have flipped my car around and am racing home. I called Bryan and told him what was going and that I was taking her to the urgent care. He said he would meet me there. I got home and ran upstairs and she was in her room. I told her we needed to go to the doctors and asked if she wanted to get dressed. She did. I was pulling out clothes, asking her all kinds of questions. Some she could answer with no issue, others she struggled before finding the words. Some sentences started out clearly, others trailed off into the wrong words. Some things she said made perfect sense and she spoke them quickly, others she offered voluntarily but they were complete nonsense. Everything she said sounded tired and disinterested. I told her I was very scared and taking her to the hospital and that if she was just not answering or saying the wrong things to be difficult that she needed to tell me now because I was taking this very serious. I asked her if she wanted to brush her teeth (I know that seems strange given the circumstances, but her breath was particularly foul - combined morning breath and sick smell - and I know that kind of thing normally bothers her a great deal). She told me she needed to go to the bathroom. I led her there and she was able to go to the bathroom and wash her hands and splash water on her face (all very routine things) with no issue. I asked again if she wanted to brush her teeth, planning on helping her, and she picked up the soap dispenser to put it toward her mouth, then shook her head in frustration and put it back down. She next grabbed the toothpaste but couldn’t figure out what to do with it. At that point I grabbed her and raced downstairs.
On the drive to the hospital (a smaller, satellite version of Children’s near our home) I asked Kailee all kinds of questions. Her answers were mostly sluggish, some were accurate some were not. The drive took about 10-12 minutes and by the time we arrived she really wasn’t making much sense at all and she didn’t want to talk. In the car she asked for water because she was very thirsty and I always keep water in the same place and she always takes my water. This time I handed it to her and opened it for her and she seemed surprised when it was put in front of her - wondering where it came from. She asked for gum and while she chewed it without difficulty, at one point she took it out and stuck it to the opening of the water bottle (100% uncharacteristic). When we arrived she couldn’t open her door so I walked around and got her out and held her hand while we walked in. When we arrived at the counter to check in she immediately sat on the floor, even though chairs were nearby (highly uncharacteristic - Kailee is an incredible germaphobe and would never sit on the ground). As I was checking in Bryan arrived. They asked her to stand so their computer could take a photo as she needed a new one in the system, and she didn’t want to stand and cried and fussed.
They took us back immediately. She stumbled walking to the bed in the room and had trouble getting on it. She was very lethargic during the initial exam and seemed to be very bothered by the light. We turned the light down and the doctor tried to get her to look at me, or her dad, or her grandma (who had arrived by this point, as had her aunt). While she could understand the command, she was reluctant to do it but she finally did. They discussed doing a CAT scan and a couple other things. While they were prepping her and trying to examine her she had a seizure. I can’t tell you much about it - Bryan noticed it before anyone else because he was up by her head and is a former EMT and knows what he was seeing. Her head snapped back, her neck got very tense, her upper body started to shake. I had a meltdown and panic attack. I had to leave the room.
They immediately rushed her to their trauma/procedure room and began working on her. I was told later that she was able to come out of the seizure on her own, without intervention. I think that one lasted less than a minute. They called for an ambulance from the main Children’s campus and they got her a CT scan and prepped her for transport. During this time - the entire time she was at this northern Children’s office - she was highly combative. She would yell no and stop and “peese” (instead of please) to get the doctors to stop and leave her alone. She didn’t want to do anything cooperative. She was fairly resistant to touch - even mine. Once the transport came we got her to Children’s without much issue.
Here’s where things might be fuzzy so let me just tell you all that has been done since she’s been here - it probably won’t be chronological. First off, the CT scan was normal, and we found that out fairly quickly. She was monitored in the PICU on Friday and into the evening things seemed to be settling down a bit. Everything we were getting back in terms of results was normal/negative. She didn’t say a whole lot, but she followed some commands some time and others she didn’t. She was put on an EEG to monitor her brain and watch for seizures. She was still fairly combative and wanted to be left alone. She was given an LP (spinal tap). In the middle of the night, she had two more seizures - one at 3:12 am, the next at 4:42 am.
Saturday: she had a fairly quiet morning after those initial seizures, with the same behavior she’d exhibited on Friday. She was restless, and any time anyone messed with her, her body would do this kind of rhythmic rocking. At one point she saw Bryan and very clearly said ‘hi daddy’. A little later she was up a bit and restless and I came around the side of the bed and she very easily said to me ‘oh hi mommy.’ It was a precious gift. Aside from that she’s said very little up to this point - if she did it was maybe the word no, at one point she said ‘my gosh’ in exasperation when she kept wanting to pull down her nightgown and they wouldn’t let her. At one point she sat up and smiled at me, then rolled her eyes at the nurse who was annoying her. All very Kailee things to do. During the day on Friday she smiled at my family when she saw them sitting across the room. She smiled a couple of times at me and Bryan.
Later in the day on Saturday (around 4 or so) she went down for her MRI and a feeding tube insertion. Both procedures went well. She came back up to recover (she had anesthesia for the MRI) and - while I can’t remember exact times - the seizures began. She had a few in the evening and then by later in the night she was having a lot in rapid succession. I think between 12 am - 2 am there were 13. During all of this time we were just sitting vigil, waiting for the next seizure because her pulse ox would drop and we’d need to give her oxygen. At that point they made the decision to intubate and put her on a versed drip. They also decided to put her back on the EEG (they had removed it for the MRI, and thought they could keep it off because all of her seizures had been clinical [meaning they could see what the symptoms were, rather than sub clinical meaning the brain has a seizure but we don’t know it’s happening]).
Once all that was done (around 3 am) Kailee finally slept peacefully. She maintained this until about 3 pm on Sunday when the seizures started again. I believe she had about 3 - 4 and then by 7 pm or so she was having them about once an hour. Between 3-4:30 am she had a few in succession, then didn’t have another one until around 8 am - that one was the longest at around 4-5 minutes. She's had several since then. These seizures are evident only by the fact that her eyelids open, her eyes are deviated to the right or left, her blood pressure and heart rate spike. Her EEG is monitored closely by neurology, and they have adjusted treatment accordingly. When she first started on the versed drip her dose was .2 - it is now at .45.
Currently she is on the versed drip (sedative and anti-seizure) and fentanyl for pain management. She’s also on additional anti seizures including Kepra (the first drug they started), lacosamide and clonazepam. She’s also on acyclovir (more on that in a moment), tylenol for the constant fever she’s had and zantec for her gut.
The goal is to stop the seizing. The next goal is to figure out what’s causing them. This is the difficult one (well they’re both difficult). So far every test we have done has come back normal. Every lab, every scan, the CT the MRI the spinal fluid - you name it, normal. No obvious signs of infection, though they are still approaching this with the idea that an infection or virus of some sort is causing this. The seizures are taking place in two distinct parts of her brain, a common place for the HSV-1 virus to hang out (herpes - the oral kind). The spinal fluid HSV test came back negative, the MRI showed no signs of it. They’ve decided to go ahead and treat right now using the acyclovir. They are planning a second spinal tap today and an MRI later (more on that in a minute) - hoping that a second test might show some change from the first and give them an idea.
We’ve talked to infectious disease and thought about every place we’ve ever been and everything we could imagine she might have been exposed to. She is being tested for everything from mono to parvovirus to a bunch of other things I don’t even know about. She’s also being tested for auto immune deficiencies - those are sent to the Mayo clinic and take a bit of time to come back. Much of the infectious disease results take days and weeks to get back. They are not perfect tests. Some may be sent to a study in California being done through the State Health Dept. and the CDC.
She has been given an arterial line and a PICC line and a catheter. She’s poked, prodded and pumped all day every day. They’ve had to monitor her BP which has been weak as a result of the versed, but so far has not needed to be managed with BP meds but will be soon (more on that). She’s had some issues with congestion and they’ve been working on suctioning her regularly. For every issue she’s had there seems to be a drug they want to give her to help manage it. It’s a bit overwhelming, but I’m doing ok right now at keeping it straight.
We just had rounds, and the new plan - because of the continued seizures - is to stop the versed drip and move to pentobarbitol instead. This will put her in a medically-induced coma. I have cried much over this, but it seems the best thing to do. It will take about 24 hours to get her brain to sleep, another 24 hours to keep her asleep with no seizures, then the time to bring her out of it. On the short end, three days - but probably a longer process than that. If she seizes during the process they will reassess how much and how to give it to her. She will be put in blood pressure medication because of the risks associated with being on the pentobarbitol. She will also be started on IVIG - a round of drugs to address the auto immune possibilities but that is not steroids (meaning it won't suppress her immune system because they still don't know if there's some bacteria somewhere or virus that isn't manifesting itself).
I know this is long - most of you don’t need all these details but I’m trying to share all I can. When I have seen a recommendation or a thought from one of you I have shared it with the doctors. If you have any thoughts or ideas that may not have been considered we are open to them. I have plans to use frankincense oil on Kailee’s feet and someone mentioned cannabis oil but I haven’t looked into it yet. Obviously we are letting Children’s dictate the course of action right now and we have a great deal of faith and trust in them. But it’s an all hands-on deck situation and if you have some medical experience or advice please let us know. We’ll talk to anyone.
Thank you for your love, support and continued prayers. Please don’t stop. Please keep this going. We have to do what we can, while Kailee does what she can. I am confident she is with the angels right now, and being comforted and loved by her Savior. I have asked her to ask Christ to please stop the seizures, but mostly I just tell her to rest and be strong. We’re being strong on this end, we need her to be strong on that end. Please keep sending your prayers, love and light. Please don’t stop. I know it’s Christmas and you all have your own lives. I know these stories are interesting at first but they become routine. This is not routine for us - nothing about this feels ok. Kailee is a unique soul with big potential in this world - we need her back with us as soon as possible.
Thank you, and may God truly bless you and yours for your love.
Kailee Reese Gibson is an 11 year old superstar (really, an amazing little singer) who has recently rushed to Children's hospital for seizures and lethargy. She had flu-like symptoms for about a week, but on Friday December 18th, things changed. Since Friday, Kailee has had multiple seizures and the cause is still unknown. She is now in a medically-induced coma to stop the seizures and rest her body. This is a very special little girl and family and they could use some financial support.
Below is a facebook post written by Kailee's mother, Natalee. Although the post is long, Natalee is an engaging writer and details the onset and progression of her daughter's symptoms very well.
Thank you for reading!
Chris and Lori Duncan...and all of the friends and family who know and love the Gibson family.
A post by Natalee Gibson:
Kailee exhibited flu like symptoms all week prior to this happening. The first notice of anything amiss was a Saturday morning indoor soccer game while, even though she killed it on the field and played with lots of energy and strength, when she would step off the field she complained of having a very hard time controlling her breathing and feeling very taxed. She was particularly whiny about it - at the time I thought it was because she hadn’t played for two weeks and was feeling particularly winded. True to Kailee form, though she complained off the field when it was her turn to go on each time she played with her whole heart. Sometime on that day she had mentioned to Bryan that she had pain that started in her chest and radiated down. She said it very cavalierly, and she was acting completely normal, so it was easy to think it was one of those random one-time pains we all get from time to time.
The next day, Sunday December 13, Kailee complained during church (around 1 pm) that her legs were tired. She also had mentioned that chest pain earlier at church - around 12 pm. After she complained of her legs hurting I was pretty confident we were looking at the onset of the flu. She started running a fever Sunday night and we kept her home from school on Monday. We ended up keeping her home all week from school because we could not get the fever to come down. I treated her all week with a tylenol/motrin mix and while the fever broke a couple of times, for the most part it stayed in the range of 101-103. I think highest I recorded was 103.6 and I think that was on Wednesday morning (possibly Tuesday, it’s hard to remember). For most of the week she had very little energy - she was quite lethargic on Monday and Tuesday particularly. Kailee is an avid reader and she didn’t even have the energy to hold a book. She watched tv, but wasn’t overly engaged. She complained of overall aches, but nothing specific. She had a little congestion, but nothing major. She had a diminished appetite but would eat and kept food and drink down. She ate better when the Motrin would kick in, though she ate far less than normal. She didn’t have any vomiting or diarrhea. I called the pediatrician on Tuesday and we agreed to continue with our course of treatment, and to call if there were any major changes or prolonged symptoms.
By Wednesday I thought she was a bit better. Still tired, still had a fever, but more energy. By Thursday the fever was low - I think the highest read I got was 100 for the day, but again we kept her home to rest. While we had canceled all her activities during the week, she had a very important birthday party Thursday night, and we thought she was good enough to attend for a short while. The party was a sleepover, but we had planned to pick her up after a couple of hours, and asked her to text us when she was ready. The party mom, Kim, texted to tell us Kailee seemed awfully tired and removed from the action at the party, so we went and picked her up - Kailee also texted to say she was ready to go home. On the way home, she cried because she felt so bad. But when she got home she ate her cupcake and then laid down next to me on the couch. We assumed she was taxed from the little bit of activity she had done all week.
Friday morning I went to visit a friend briefly but I woke Kailee up before I left to check on her (about 8:30 am). She was awake and while she still seemed to have similar symptoms of being tired and not feeling great, I didn’t suspect anything different or new. I couldn’t take her temperature because we ran out of the ear covers, so I told her to go downstairs and get something to drink and I would call the pediatrician and get an appt for her. I called the pediatrician on the way to my friend’s house and told them we need to bring her in. I suggested we test for strep at this point as the fever just wasn’t going away (though Kailee has often had strep and said all week she didn’t think it felt like strep. I do understand that strep can present in different ways, so I thought it was time to check). After I left my friend’s house I stopped by Walgreens to pick up ear covers and called Kailee - it took some time to get her on the phone, even after I called Keegan and told him to go up and tell his sister to call me. At the time she said the phone wasn’t working (not necessary unusual, we use cell phones and sometimes they are temperamental with the cell coverage) but I am not sure if that was the beginning mark of the confusion. I asked her why she didn’t go downstairs like she said she would and I was a bit frustrated with her because I wanted her to make an effort to hydrate herself and get better. She told me had some water in her room. I asked how much she drank and she couldn’t say. I told her to just tell me what cup she had, that would give me an idea. She couldn’t describe the cup - I told her we don’t have that many, I’ll know which one it is - just tell me the color. She said 'it’s pink, no blue, no red… Elsa… ugh! why I am I doing this?”
At this point I was nervous and we had the following exchange (this took place about 9:45 am):
Me: What is your name?
Her: Kailee
Me: What is your last name?
Her: Gibson
Me: When were you born?
Her: September
Me: What year?
Her: I don’t know
Me: What is my name?
Her: Natalee
Me: What is dad’s name?
Her: I don’t know
At this point I have flipped my car around and am racing home. I called Bryan and told him what was going and that I was taking her to the urgent care. He said he would meet me there. I got home and ran upstairs and she was in her room. I told her we needed to go to the doctors and asked if she wanted to get dressed. She did. I was pulling out clothes, asking her all kinds of questions. Some she could answer with no issue, others she struggled before finding the words. Some sentences started out clearly, others trailed off into the wrong words. Some things she said made perfect sense and she spoke them quickly, others she offered voluntarily but they were complete nonsense. Everything she said sounded tired and disinterested. I told her I was very scared and taking her to the hospital and that if she was just not answering or saying the wrong things to be difficult that she needed to tell me now because I was taking this very serious. I asked her if she wanted to brush her teeth (I know that seems strange given the circumstances, but her breath was particularly foul - combined morning breath and sick smell - and I know that kind of thing normally bothers her a great deal). She told me she needed to go to the bathroom. I led her there and she was able to go to the bathroom and wash her hands and splash water on her face (all very routine things) with no issue. I asked again if she wanted to brush her teeth, planning on helping her, and she picked up the soap dispenser to put it toward her mouth, then shook her head in frustration and put it back down. She next grabbed the toothpaste but couldn’t figure out what to do with it. At that point I grabbed her and raced downstairs.
On the drive to the hospital (a smaller, satellite version of Children’s near our home) I asked Kailee all kinds of questions. Her answers were mostly sluggish, some were accurate some were not. The drive took about 10-12 minutes and by the time we arrived she really wasn’t making much sense at all and she didn’t want to talk. In the car she asked for water because she was very thirsty and I always keep water in the same place and she always takes my water. This time I handed it to her and opened it for her and she seemed surprised when it was put in front of her - wondering where it came from. She asked for gum and while she chewed it without difficulty, at one point she took it out and stuck it to the opening of the water bottle (100% uncharacteristic). When we arrived she couldn’t open her door so I walked around and got her out and held her hand while we walked in. When we arrived at the counter to check in she immediately sat on the floor, even though chairs were nearby (highly uncharacteristic - Kailee is an incredible germaphobe and would never sit on the ground). As I was checking in Bryan arrived. They asked her to stand so their computer could take a photo as she needed a new one in the system, and she didn’t want to stand and cried and fussed.
They took us back immediately. She stumbled walking to the bed in the room and had trouble getting on it. She was very lethargic during the initial exam and seemed to be very bothered by the light. We turned the light down and the doctor tried to get her to look at me, or her dad, or her grandma (who had arrived by this point, as had her aunt). While she could understand the command, she was reluctant to do it but she finally did. They discussed doing a CAT scan and a couple other things. While they were prepping her and trying to examine her she had a seizure. I can’t tell you much about it - Bryan noticed it before anyone else because he was up by her head and is a former EMT and knows what he was seeing. Her head snapped back, her neck got very tense, her upper body started to shake. I had a meltdown and panic attack. I had to leave the room.
They immediately rushed her to their trauma/procedure room and began working on her. I was told later that she was able to come out of the seizure on her own, without intervention. I think that one lasted less than a minute. They called for an ambulance from the main Children’s campus and they got her a CT scan and prepped her for transport. During this time - the entire time she was at this northern Children’s office - she was highly combative. She would yell no and stop and “peese” (instead of please) to get the doctors to stop and leave her alone. She didn’t want to do anything cooperative. She was fairly resistant to touch - even mine. Once the transport came we got her to Children’s without much issue.
Here’s where things might be fuzzy so let me just tell you all that has been done since she’s been here - it probably won’t be chronological. First off, the CT scan was normal, and we found that out fairly quickly. She was monitored in the PICU on Friday and into the evening things seemed to be settling down a bit. Everything we were getting back in terms of results was normal/negative. She didn’t say a whole lot, but she followed some commands some time and others she didn’t. She was put on an EEG to monitor her brain and watch for seizures. She was still fairly combative and wanted to be left alone. She was given an LP (spinal tap). In the middle of the night, she had two more seizures - one at 3:12 am, the next at 4:42 am.
Saturday: she had a fairly quiet morning after those initial seizures, with the same behavior she’d exhibited on Friday. She was restless, and any time anyone messed with her, her body would do this kind of rhythmic rocking. At one point she saw Bryan and very clearly said ‘hi daddy’. A little later she was up a bit and restless and I came around the side of the bed and she very easily said to me ‘oh hi mommy.’ It was a precious gift. Aside from that she’s said very little up to this point - if she did it was maybe the word no, at one point she said ‘my gosh’ in exasperation when she kept wanting to pull down her nightgown and they wouldn’t let her. At one point she sat up and smiled at me, then rolled her eyes at the nurse who was annoying her. All very Kailee things to do. During the day on Friday she smiled at my family when she saw them sitting across the room. She smiled a couple of times at me and Bryan.
Later in the day on Saturday (around 4 or so) she went down for her MRI and a feeding tube insertion. Both procedures went well. She came back up to recover (she had anesthesia for the MRI) and - while I can’t remember exact times - the seizures began. She had a few in the evening and then by later in the night she was having a lot in rapid succession. I think between 12 am - 2 am there were 13. During all of this time we were just sitting vigil, waiting for the next seizure because her pulse ox would drop and we’d need to give her oxygen. At that point they made the decision to intubate and put her on a versed drip. They also decided to put her back on the EEG (they had removed it for the MRI, and thought they could keep it off because all of her seizures had been clinical [meaning they could see what the symptoms were, rather than sub clinical meaning the brain has a seizure but we don’t know it’s happening]).
Once all that was done (around 3 am) Kailee finally slept peacefully. She maintained this until about 3 pm on Sunday when the seizures started again. I believe she had about 3 - 4 and then by 7 pm or so she was having them about once an hour. Between 3-4:30 am she had a few in succession, then didn’t have another one until around 8 am - that one was the longest at around 4-5 minutes. She's had several since then. These seizures are evident only by the fact that her eyelids open, her eyes are deviated to the right or left, her blood pressure and heart rate spike. Her EEG is monitored closely by neurology, and they have adjusted treatment accordingly. When she first started on the versed drip her dose was .2 - it is now at .45.
Currently she is on the versed drip (sedative and anti-seizure) and fentanyl for pain management. She’s also on additional anti seizures including Kepra (the first drug they started), lacosamide and clonazepam. She’s also on acyclovir (more on that in a moment), tylenol for the constant fever she’s had and zantec for her gut.
The goal is to stop the seizing. The next goal is to figure out what’s causing them. This is the difficult one (well they’re both difficult). So far every test we have done has come back normal. Every lab, every scan, the CT the MRI the spinal fluid - you name it, normal. No obvious signs of infection, though they are still approaching this with the idea that an infection or virus of some sort is causing this. The seizures are taking place in two distinct parts of her brain, a common place for the HSV-1 virus to hang out (herpes - the oral kind). The spinal fluid HSV test came back negative, the MRI showed no signs of it. They’ve decided to go ahead and treat right now using the acyclovir. They are planning a second spinal tap today and an MRI later (more on that in a minute) - hoping that a second test might show some change from the first and give them an idea.
We’ve talked to infectious disease and thought about every place we’ve ever been and everything we could imagine she might have been exposed to. She is being tested for everything from mono to parvovirus to a bunch of other things I don’t even know about. She’s also being tested for auto immune deficiencies - those are sent to the Mayo clinic and take a bit of time to come back. Much of the infectious disease results take days and weeks to get back. They are not perfect tests. Some may be sent to a study in California being done through the State Health Dept. and the CDC.
She has been given an arterial line and a PICC line and a catheter. She’s poked, prodded and pumped all day every day. They’ve had to monitor her BP which has been weak as a result of the versed, but so far has not needed to be managed with BP meds but will be soon (more on that). She’s had some issues with congestion and they’ve been working on suctioning her regularly. For every issue she’s had there seems to be a drug they want to give her to help manage it. It’s a bit overwhelming, but I’m doing ok right now at keeping it straight.
We just had rounds, and the new plan - because of the continued seizures - is to stop the versed drip and move to pentobarbitol instead. This will put her in a medically-induced coma. I have cried much over this, but it seems the best thing to do. It will take about 24 hours to get her brain to sleep, another 24 hours to keep her asleep with no seizures, then the time to bring her out of it. On the short end, three days - but probably a longer process than that. If she seizes during the process they will reassess how much and how to give it to her. She will be put in blood pressure medication because of the risks associated with being on the pentobarbitol. She will also be started on IVIG - a round of drugs to address the auto immune possibilities but that is not steroids (meaning it won't suppress her immune system because they still don't know if there's some bacteria somewhere or virus that isn't manifesting itself).
I know this is long - most of you don’t need all these details but I’m trying to share all I can. When I have seen a recommendation or a thought from one of you I have shared it with the doctors. If you have any thoughts or ideas that may not have been considered we are open to them. I have plans to use frankincense oil on Kailee’s feet and someone mentioned cannabis oil but I haven’t looked into it yet. Obviously we are letting Children’s dictate the course of action right now and we have a great deal of faith and trust in them. But it’s an all hands-on deck situation and if you have some medical experience or advice please let us know. We’ll talk to anyone.
Thank you for your love, support and continued prayers. Please don’t stop. Please keep this going. We have to do what we can, while Kailee does what she can. I am confident she is with the angels right now, and being comforted and loved by her Savior. I have asked her to ask Christ to please stop the seizures, but mostly I just tell her to rest and be strong. We’re being strong on this end, we need her to be strong on that end. Please keep sending your prayers, love and light. Please don’t stop. I know it’s Christmas and you all have your own lives. I know these stories are interesting at first but they become routine. This is not routine for us - nothing about this feels ok. Kailee is a unique soul with big potential in this world - we need her back with us as soon as possible.
Thank you, and may God truly bless you and yours for your love.
Organizer and beneficiary
Lori Jones Duncan
Organizer
Broomfield, CO
Bryan Gibson
Beneficiary
