Kai was born a preemie at 34 week. Like many other toddlers, Kai grew up healthy, happy, and high-energy kid. Suddenly, like a nightmare no parent would want, Kai got really sick. This all happened pre-shut down times but very unaware of covid 19 period. Monday, February 3rd 2020 Like normal, I dropped and picked Kai up from school. Later that evening he seemed a bit more irritated than usual but we didn't think much about it since we thought he was overtired. Before bedtime, I felt he was warm and coming down with a fever so I gave him children tylenol. We went to bed and I slept with him because I had been sick a week prior and he started coughing so we didn't want to infect my husband and 3 month-old baby sister. Tuesday, February 4th 2020 We woke up and I remembered it freaked me out because his fever didn't go down. I took his temperature and it was 101 degrees F and things started to changed drastically. Kai wasn't himself at all. He was sluggish and quiet. He wasn't in the mood for his favorite cartoons or toys. Of course, throughout the day I gave him tylenol and alternate with motrin for fever. I called my husband at work around noon and told him what happened. He asked me if I want to take him to urgent care when he come home from work. I could not take Kai to urgent care by myself because I have my 3 month-old baby too. When my husband got home around 7-8pm, we asked my mom to come over to watch my baby and we took Kai to the ED(Emergency Department) instead of urgent care clinic. His temperature was still ranging between 99-101 degrees F throughout the day. When we got to the ED, we saw so many sick people, and of course with the covid 19 outbreaks we didn't want to get infected or catch something worse so we left before we could be seen. We took Kai home and around 9pm we tried so many things to get his fever down including giving him a lukewarm bath. We didn't think ED or Urgent Care would help much because for the past 2 months both Kai and my newborn baby have visited both facilities for flu and cold and they didn't do anything newer than what we could at home. Maybe the lukewarm bath and because we took him outside in the cold, it did reduced his temperature down to 99 degrees. Throughout the night he kept tossing, turning and moaning. He said he was cold but I can feel his body was burning up. He was having the chills. I kept wet towels on his forehead, armpits, and neck all night to help reduced his temperature. Both of us couldn't sleep at all. Me coughing and still sick and Kai was burning up with fever. Wednesday February 5th We woke up and Kai was crying and complaining of stomach pain. I called his pediatrician office to be seen on the same day. We got an appointment to be seen with the PA (Physician Assistant) since his pediatrician was not available until Friday. We saw the PA and she diagnosed him with Otitis Media aka ear infection. By this time, Kai started to have a swollen lymph node on his right neck. The PA noticed some redness and swelling inside his throat. She prescribed him amoxicillin. Kai still wasn't himself and was not in the mood for anything at all. That night was rough, his temperature kept spiking up and down and his swollen lymph node was so painful, he cried all night. Thursday, February 6th Both Kai and I didn't sleep at all again. That morning Kai started having a rash on his chest and back. I called the doctor office and we went back to be seen by the same PA. She told us to stop amoxicillin because he could develop an allergic reaction to it. For me, I didn't think it was an allergic reaction because Kai had taken amoxicillin before and didn't have any side effects. I immediately texted his pediatrician, Dr.Magoune to inform her of the situation. At the doctor's office his temperature spiked up to 104 F and his rash has gotten worse and spread more to his arms. Everyone frantically trying to bring down his fever. The PA changed his antibiotics to erythromycin. We gave the new antibiotics a try that day. Of course, like any other parent I went on Google and WebMD to do some research. I spoke to my sister who is a Pharmacist. We thought he had either the measles or roseola virus base off his symptoms thus far. Friday, February 7th His temperature still didn't go down. We went back to the doctor's office and we got to see his pediatrician, Dr. Magoune. Kai at this point was nonverval and was lethargic. After she examined him and heard about his symptoms thus far (fever, swollen lymph node, rash) she diagnosed him with Kawasaki Disease. When I heard that term it hit me like a ton of bricks. First, I have no clue what that is. Second, how can my son has a disease? Dr. Magoune said Kawasaki Disease is rare and normally is hard to diagnosed until all symptoms are present. Most importantly, this disease has a 10-Day window period for treatment or else it is too late. She advised us to take him to the ED immediately. She emphasized it has to be a hospital where they are familiar with Kawasaki Disease or else he will be misdiagnosed. However, due to having an infant at home we didn't want to go far so we decided to take Kai to our local hospital instead. At this point, we were on Day 5 out of 10. We left the doctor's office in the afternoon and went home to pack a few things because we knew we were going to be spending a few days at the hospital for his treatment. We took Kai to a nearby local hospital ED around 6pm. Dr. Magoune had written a note for us to take to the ED where she indicated treatment for Kawasaki Disease. By this time, Kai has developed redness in both eyes. We were immediately brought in for testings. They did an EKG, chest x-ray, urine culture, strep culture, ultrasound, and blood test. Hours later in the ED, results came back and the ED PA said he had bacteria in his urine and diagnosed him with UTI but was negative for Kawasaki Disease. Also, chest x-ray indicate he had bronchiolitis. We were a bit shock but also relief. Relief that he doesn't have a rare disease but shock because UTI is not common in boys. Kai vomitted a lot in the ED and his urine was dark and black color. Since he was dehydrated they put an IV in him and also for antibiotics treatment. The ED PA told us Kai will be admitted for antibiotics treatment for UTI. We waited until around 3AM and Kai was admitted. We were in the ED from 6pm until 3AM before we got admitted for a room. Saturday, February 8th When we got admitted to Pediatrics Floor at 3:30AM. Kai was given a crib to sleep. This was not going to be good at all. My son is 3.5 feet tall and he sleeps in a bed at home but yet they gave him a crib that look like a cage. It is an open floor with multiple beds and cribs where he shared with other kids. Also, they only allow 1 parent to stay overnight and sleep on a chair. I stayed with him the first night and held him to sleep because he did not want to be in the crib. Later that day, the Hospital Pediatrician, Dr. Nichols, informed us his urine had some bacteria and lab is pending for bacteria growth. Therefore, the UTI diagnosis wasn't 100% certain, but he was certain Kai did not have Kawasaki Disease. It didn't give us much comfort but we trust him since he is a doctor after all. I left that night to go home and get some sleep because I haven't slept in days and was still coughing. My husband stayed with Kai that night. I left at 1:30AM to go home because I still need to pump milk to feed my other baby. Being sick, having a sick child in the hospital, and many sleepless nights. I guess I didn't have time to process everything and was too overwhelmed. When I got home I saw Kai's toys, his empty bedroom, and unwashed clothes laying around I broke down. The images of him in pain and crying for help. Him getting poke with needles and IV. I felt defeated and broken. I felt like I had failed my son. It was the most heart wrenching feeling only a mother of a sick child can understand. Sunday, February 9th I came back in the morning and Kai was super swollen, face, hands and feet. His eyelids were swollen. Both eyes were bloodshot red and had some discharge. Lips were crack and dried. My husband told me Kai could not sleep at all and was crying all night. It really didn't help that he had bronchiolitis and nasal congestion. He did not look like our son at all. Both me and my husband were just bawling in tears and felt helpless when our son was in so much pain. Dr. Nichols came by during morning rotation and reassured us to be patient and let the antibiotics run its course and by Day 3 we should see improvement. At this point, every hour they keep checking his vitals, giving him tylenol alternate motrin for pain and fever plus eye drops for redness, swelling, and discharge. My poor baby loss his appetite for 3 days and did not eat anything because he kept saying something hurts inside his mouth. They did many tests on him which traumatized him. Later that night it took me forever to comfort him so he can rest, but the nurse kept interrupting to take his vital signs every freaking hour. Putting eye drops and shining flashlight into his eyes to check for redness and discharge. My poor baby cried and screamed "mommy where are you. I can't see. I want my mommy" even though i was standing by his crib and hugging his arms. It broke my heart. Kai wanted me to hold him but I couldn't because he was caged up in the stupid crib. Monday, February 10th My husband came back in the morning and I told him the terrible ordeal we had to endured last night. He saw Kai's symptoms got worse and was in bad shape. By this time, it was shift change from Dr. Nichols to Dr. Van. Both my husband and I kept thinking it cannot be a simple urinary infection and had to be something else because his symptoms did not match UTI. He finished his 3-day course of antibiotics for UTI but all symptoms and fever still present. By this time my husband was really upset and broke down in tears because we see no improvement. We had to retell the whole story again to Dr. Van and I mentioned to her that our pediatrician suspected Kawasaki Disease. Dr. Van wanted to redo his blood work, urine, and also did an echocardiogram. When the blood result came back she said Kai had very high protein in his blood but echo was normal and urine had some bacteria but it was not alarming. Dr. Van called the Infectious Disease Center to give them Kai's history and symptoms. She explained to us that it could be Kawasaki Disease and we could start IVIG treatment, but she was not 100% certain. At this point, both me and my husband have made up our minds and asked to be transferred to CHOC (Children's Hospital of Orange) for treatment. We were not going to spend another night at this uncomfortable place and since this hospital does not specialized in children we could not take the risk of misdiagnosis again. I went home to pack us some clothes and also kiss my baby girl goodbye since I won't be home for a while. CHOC was about 35 miles from our house so I couldn't go back and forth like our local hospital which was only 10 mins drive. Fortunately, I had a lot of frozen breastmilk store for emergency cases for my baby at home. Later that evening, Kai was transported to CHOC at 9pm by ambulance. I rode in the ambulance with Kai while my husband drove our car behind the ambulance. When we arrived at CHOC, there were team of doctors and nurses came to see Kai to hear our story again. Instead of running more unnecessary tests on him, they gave us options and choices for treatment. Of course, we want to start the IVIG treatment and aspirin immediately at midnight because we were at Day 8 out of 10. The IVIG treatment took 12 hour during which the nurse kept monitoring Kai to make sure he did not have any bad reactions. All of us finally were able to get some rest, including Kai. Tuesday, February 11th Kai was able to get some sleep last night in a long time. He was still swollen and sluggish but his mood seem a bit better. The plus side of being at CHOC beside their amazing doctors and facility, they allowed both parents to stay overnight and even had a bed for us to sleep. The IVIG treatment finished at 12:30pm. We are now in the 36 hours waiting period. During the 36 hours Kai had several high fevers. How do we know if the treatment work? He need to be fever free after the 36 hours mark. If he still has a fever after 36 hours then he need to do a second IVIG, Remicade, or steroid treatment. As for his physical prognosis. He gained 6 lbs but had not eaten anything in 5 days. Wednesday, February 12th It was a waiting game. All we can do was pray and hope he doesn't get any fever. Kai slowly started to get his appetite back. The swelling on his arms and face have subsided. He seem to be a bit more vocal but still irritated. He is on high dose of aspirin daily for blood thinner. The ID (Infectious Disease) doctor said this disease can trick thinking it is an infection or UTI because the blood vessels are inflamed. This made us so mad because we wasted 3 days of antibiotics treatment when he really did not need it. Thursday, February 13th Kai was fever free passed 36 hours mark. However, the infectious disease doctors wanted to make sure no delay fever so they wanted to keep him one more night. By this time, all the swelling were gone, eye redness disappeared, rash has moved down to his legs, and he finally wanted to eat more. He still complained of soreness and pain inside his mouth. He was wobbly because of all the puffiness in his legs plus he was bed bound for a whole week. He did not have a bowel movement in 6 days. Friday, February 14th No fevers and all symptoms seemed to disappeared except for a bit rash on feet. We got discharged to go home. Kai started to get his funny personality back and is very vocal. However, irritability is part of the disease so he can get irritated easily. It will take at least 6-8 weeks before Kai can get back to being his normal self again. He can walk for a bit now but still very weak. He will have to repeat an Echo to recheck his heart in 2 weeks and another one in 6 weeks. He still need to be on low dosage aspirin daily. If at anytime he spike a fever we need to bring him back to CHOC immediately.
bronchiolitis and UTI
He is clear and doesn't need to take aspirin or repeat echocardiogram. He can lead a healthy and happy life.