Thursday, January 30th, 2020
It was just another day like usual. Jenyka went to preschool and afterwords we attended an open house at Anser Charter school to start Kindergarten in August. She was her happy, goofy, and sassy self.
Friday, January 31st, 2020
Jenyka went to preschool as normal. She came home from preschool and complained her neck was hurting. She seemed to move it very little. She used the neck pillows to help, as well as an ice pack.
Saturday, February 1st, 2020
Jenyka's neck was hurting even more today. She could not move it nor have us touch it. We just assumed it was a kinked neck and she slept on it wrong. She started to get a fever and felt very warm, more than usual. We gave her Tylenol to help with the fever and continued to give her an ice pack for her neck. She also started displaying signs of constipation. She would scream while sitting on the toilet and would hold her stomach. I gave her pedia-lax to help with the constipation due to her previous constipation issues in December of 2019. She would drink and eat very little. If she was thirsty, all she wanted was water.
Sunday, February 2nd, 2020
Jenyka was screaming in pain from her neck and continued to have a fever. We took her into St. Luke's Family Clinic on parkcenter in Boise. The doctor tested her for strep and influenza, both tests came back negative. The doctor believed she did not have any symptoms for Meningitis and believed it was a cold. He went ahead and sent us home. Throughout the day, Jenyka continued to have constipation and would only continue to drink water. She was not interested in food. She laid down on the couch all day and we continued to give her Motrin and Tylenol.
Monday, February 3rd, 2020
Jenyka's fevers continued. Her neck pain was still present. I could tell she was not herself. All she wanted was water. She woke up with boogers on her eyes and the blood vessels in her eyes seemed to pop out more than usual. Jenyka continue to say her tummy hurt. We continued to give her Motrin, Tylenol, and over the counter medications to help with the constipation. We also noticed Motrin seemed to work better in reducing her fever.
Tuesday, February 4th, 2020
Jenyka still displayed signs of constipation and continued to have a fever. She would drink small amounts of water. She laid down and did not play. We continued to give her Motrin and Tylenol but as soon as they wore off, her fever would spike back up. Towards the evening, we noticed rashes started to pop up on her stomach and back. She also had a sore in her mouth on her right cheek, that seemed to bother her. She was only able to have one bite of spaghetti and a small piece of a Popsicle. She kept saying her food tasted weird and would not drink Pedialyte. All she wanted was water. We also noticed her lips started to look really chapped and dry. We were tempted to take her to the ER at midnight due to discovering the rashes on her belly and back but she fell asleep and seemed to calm down.
Wednesday, February 5th, 2020
We rushed Jenyka to the St. Luke's urgent care at 8am. We woke up to snow and traffic was very slow, therefore, we did not arrive until close to 9am. We thought for sure we would be waiting an hour due to the amount of people in urgent care but to our surprise we were called in before everyone else. The female doctor, examined Jenyka and gave her Motrin. She referred her to the St. Luke's Emergency Room due to her beliefs of Jenyka having Meningitis. We rushed her to the St. Luke's Emergency Room and she was immediately taken into a room. The emergency room doctor found her symptoms to be similar to Meningitis. They did an x-ray of her chest, IV was started to give her fluids, and a urine test was requested. The doctor also requested a lumbar drain be done to confirm she had meningitis. The lumbar drain was performed and we waited for the results. The medication that was used to sedate Jenyka, made her laugh once she started to wake up. She kept saying random things like, "I need glasses. Your eyes. Doctor, your ears." She also laughed when her bed was lowered. This was the goofiest we have seen her since Friday night. Once the results came back, it showed she did not have meningitis. The emergency doctor requested another strep and influenza test. I would have never thought to run the tests again. They informed us such tests can give a false negative. Once the results came back, Jenyka tested positive for strep and negative for the influenza. The urine test also showed she had a urinary tract infection (UTI) in her bladder. We were in the emergency room for 6 hours and were sent home with a prescription for amoxicillin and clavulanate suspension (Amox-Clav 200mg 5ml Susp 75ml) to help with the strep and the UTI. We gave her one dose of the antibiotic she was prescribed and she rested for the remaining part of the day.
Thursday, February 6th, 2020
Jenyka was on her first day of taking her antibiotic 3 times a day. Once in the morning, afternoon, and evening. She fought us more than usual on taking her medication, which is not typically like her. She seemed to get irritable easily when it came time to taking the antibiotic. She would come up with every excuse to not take her medicine. She seemed to have been feeling a little bit better and ate a small amount of yogurt, a quesadilla, and mixed fruit. She rested some more for the day. Jenyka still continued to have a fever. We kept keeping it down with Motrin and Tylenol but spiked once the medication wore off. We also noticed the rashes spread everywhere on her legs, arms, hands, and face. She continued to have rashes on her tummy, back, and her bottom. She walked and moved very little.
Friday, February 7th, 2020
Jenyka was not any better. She continued to have stomach pain and a fever. She continued to lay still. She was not walking today. She was able to eat a small amount of macaroni and cheese and requested horchata (a Mexican sweet drink) although, she did not drink that much and preferred her water. I came home from work to notice she stayed in one position laying on the couch and looked with her eyes. My motherly instincts kicked in and I immediately called the St. Luke's Emergency Room. They informed me if she hasn't' been any better to take her back to the Emergency Room. I picked up my daughter from the couch and she started screaming she was in pain. At 8pm, I rushed her to the St. Luke's Emergency Room. As we waited for an hour in the ER due to the amount of people being seeing on a Friday night, she continued to feel very hot. She was completely covered in the rashes on her face, legs, arms, hands, back, and stomach. She cried every time she moved and could not walk. Her eyes also looked red, blood shot red. She looked severely ill. As we were finally called in, the doctor came in an examined her. She kept looking over her body with no explanation as to why she was in so much pain and why she presented with such severe symptoms. Any touch or movement that was done to Jenyka, she would start to scream and cry. As a mother, I thought I was going to lose her. The worst things kept coming into my mind to the point where I broke down to the uncertainty of not knowing what she had and watching her be in so much pain. I did not know where my little girl had gone and why she was in so much pain. More x-rays were order, lots of blood work, and consultations with the infectious disease doctor. The emergency doctor came in and told us she had an idea of what it looked like she had but could not confirm it. She proceeded to tell us Jenyka had to be admitted into the St. Luke's Children Hospital. After several hours of being in the emergency room, she was finally admitted into the St. Luke's Children's Center at 1:50am on February 8th.
Saturday, February 8th, 2020
Jenyka finally admitted at 1:50am. She was immediately examined by a new doctor and nurse. The doctor kept going over her symptoms. Jenyka would scream and cry at the touch of the doctor. The doctor notice Jenyka's hands were also swollen, as well, her knees, lymph nodes. They kept examining her for a while. She told us there was no exact test that would diagnose her with Kawasaki but she felt strong about the diagnosis. They let us know the treatment needed to be started right away due to the risk of any damage occurring to her heart. They immediately started her IV again. They were unable to administer her fluids and IVIG treatment at the same time so they stopped the fluids for the meantime. When they started the IVIG treatment, her blood pressure began to drop. Soon enough, they had to do a separate UV for her fluids. They kept a close eye on her blood pressure because it kept dropping below 70. Her treatment lasted longer then 12hrs, it took a full 24hrs to administer for her. You could tell the IV fluids were working to help with the dehydration because her face was chunkier than usual and her belly began to slowly get bigger. She played with her tablet for the first time since getting sick. You could tell she still had a hard time trying to sit up by herself but she was in the mood to want to be awake.
Sunday, February 9th, 2020
Treatment continued until very early in the morning (4/5am). She was starting to slowly show improvement. She was still not walking and continued to have her legs hurt, bending them hurt, and some swelling was still present. She continued to scream and cry that her legs hurt, therefore, they administered morphine through her IV to help with the pain. The rashes were finally gone now. All of her doctors and specialists wanted her to rest today to allow for healing to happen. She actually played with bubbles and started to want to color. I noticed she seemed a little bit chunkier than usual. Her belly was bigger and so were her legs. The doctors let me know it was the fluids she was being administered through her IV. She rested some more today. We noticed she would not tell us when she had to go to the bathroom. Her belly would look big, bigger than usual.
Monday, February 10th, 2020
She slept some more today. She was starting to eat but very little. She was also given a bath today and walked across the bed with the nurses help. Jenyka had a new group of new doctors come in today to go over her progress. In a way it felt like a consultation due to her having such a rare disease. Her oxygen levels kept dropping, therefore, they had to put an oxygen mask on her until they felt it was safe and her oxygen levels were stable. She started to walk today. It finally felt like the treatment had worked. She moved slowly, taking smaller steps than what she is used to. She did not scream when I had to pick her up to help her use the restroom. She actually wanted to get out of her room and go for a ride on the wagon. She played in the pediatric play room.
Tuesday, February 11th 2020
10 medical providers came into Jenyka's room to go over her treatment, progress, and plan for after discharge. We went over the risk of taking aspirin, Reyes syndrome. No live vaccinations for a year. If she comes into contact with the flu she needs to be taken to see her PCP and given temaflu. Follow up with cardiologist, infectious disease specialist, and pediatrician in two weeks. We were sent home with instructions on her medicine and her after care. Once we were home, I noticed she could not walk up and down the stairs. She could not get back up from sitting on the floor. She had some neck pain on right side (she kept leaning her head to the right)and leg pain on her right leg. She took a 2.5 hour nap after going to the grocery store. I noticed my daughter's appetite was not yet back to normal. She ate snacks here and there. As soon as I put her into her car seat, she was out. It broke my heart to see such a difference in her behavior.
Wednesday, February 12th
I came home from work to see her running. She had more energy and really sounded like herself. Her dad said she was more of herself today. She ate an actual meal today. She was a happy and goofy kid as usual but she continued to have pain on her leg but this time her left leg and left side of her neck. We had to give her Tylenol to help her sleep from the neck pain.
Jenyka's Story is still ongoing and we continue to do what we can to help her overcome this disease and prevent any further damage to her little body.
The first urgent care doctor believed she had a cold. The second urgent care doctor referred her to the ER because she believed she could not treat her severe symptoms. The first ER doctor found she had strep and a UTI. He also performed a lumbar drain to identify if she had meningitis and results came back negative. The 2nd ER doctor believed it was Kawasaki's, therefore, admitted her and she was 100% correct.
She is slowly starting to be herself. She still continues to have leg and neck pain. No rashes or fevers have come back. She has follow up appointments with her infectious diseases doctor, cardiologist, and pediatrician on the week of February 24th, 2020. So far the improvement is showing and we are starting to see our little girl.