My baby boy has Kawasaki Disease. Trenton is 10 months old and there is so much to update this month!
I figured this was a great time to tell his Kawasaki Disease story and update everyone on his condition. Some of ya’ll didn’t know all the details. We talked a lot about it on our VLOG if you want to see more, but here’s the whole story!
A Scary Start
This last month has been SO hard and I cannot believe that Trenton is 10 months old. I say that with every monthly update but it’s so true.
This month has gone by incredibly fast – mostly because we spent pretty much half of the month either in the hospital or at ER visits/checkups.
It started on March 26 – Trenton had a WEIRD episode out of nowhere and we rushed to the emergency room. He had a slight fever, became dazed and started breathing VERY irregularly. At the emergency room, the thought it was a possible febrile seizure and that he might have some form of meningitis. After a few tests and a chest x-ray, they determined that it was a possible chest infection and sent us home with medication for pneumonia.
We were confused since TJ had no sign of a cough and this all happened so suddenly. We began treating him for pneumonia and had a checkup at the doctor the next morning. At this point his fever was rising and it was very hard to get him to eat.
In the morning, he ate well and I thought he seemed a little better. At the appointment, the doctor told us to stop the medication for pneumonia because it was causing diarrhea and he needed to retain his fluids. She did not think it was pneumonia and she said it was parechovirus. The doctor told us to go home and try to get lots of fluids in him and have him rest.
ER visit #2
That night, we were in the Emergency Room at the Children’s Hospital. Trenton hadn’t eaten anything in 10 hours and his fever was still way too high. The ER didn’t seem too concerned again, which was frustrating, and they kept him there for a few tests, gave him fluids for a few hours and sent us home in the morning. This time, they scheduled him an appointment with his regular pediatrician later that day.
When we saw her, she was concerned immediately, because she knows he is normally a happy, healthy, energetic guy! She wanted to do more tests right away. Since fluid intake was one of our largest concerns at this point, he took in a little Pedialyte but was still having diarrhea and vomiting. After the first tests, she saw his potassium and electrolytes were very low. We filled him with a little more breast milk and Pedialyte and tested again. The results came back even lower. She sent us BACK to emergency and pushed the idea to find out more!
ER visit #3
When we arrived in emergency this time, the doctor finally understood that this had become something that was more than just a virus or infection. He was very concerned about meningitis and asked if they could perform a spinal tap to test his cerebral spinal fluid. THAT was scary but they were SO skilled and quick that everything went perfectly. Even some of the IVs and blood draws were more painful for him, so we were very thankful for that. They began fluids and a potassium infusion at the ER and then transferred us to a permanent room at the hospital. This was Tuesday night.
Wednesday was spent waiting for test results and focusing on fluids. Our boy was getting worse and we had no answers. This was the scary part. I had not seen my boy smile in a few days and he would lay there and groan in pain almost all day long. He was getting puffy from all the fluids and he looked horrible. Luckily, he was eating well at this point and the vomiting/diarrhea had subsided. He was able to come off of the fluids! YAY!
They told us that one of the tests came back positive and we were feeling very hopeful! Doctors told us that he had RSV (bronchiolitus) but they still weren’t sure about why some of his other levels were off. They suspected viral meningitis as well and casually mentioned Kawasaki Disease. The specialist didn’t think that he had enough Kawasaki symptoms to consider that, but it was possible for him to have incomplete Kawasaki Disease.
Finally Answers: Kawasaki Disease
Thursday morning began and he officially had a high fever for FIVE days that would not go down with Tylenol or Ibuprofen. This was important to the diagnosis. Kawasaki isn’t really considered until they have had a fever for at least 5 days. On Thursday afternoon, they suggested an echocardiogram. They officially ruled out meningitis from his spinal fluid and waited to see what his echo showed us. I was nervous about the diagnosis of Kawasaki and thinking my poor boy had something wrong with his heart now too.
They came into our room and officially diagnosed him with Kawasaki Disease. I held back tears of terror and joy at the same time. It was great to finally have an answer! However, I was scared when I heard that the coronary arteries to his little heart were TWO AND A HALF TIMES BIGGER than what they should be! We started a treatment immediately. He would do an immunoglobulin transfusion for 12 hours and then be monitored for 36 hours to see where his fever goes.
HIS FEVER WENT DOWN AND STAYED DOWN! This was amazing! I loved this because he was finally improving! His personality was starting to come back and the inflammation was beginning to go down. After the 36 hours, he was a whole new baby and we were able to go home!
He isn’t in the clear just yet though. On his most recent echocardiogram, the arteries to his heart were almost back to normal. He needs one more checkup with his cardiologist and then we will be in the clear!
This was such a crazy journey and we are SO thankful to be home!
In the back of my mind, I will ALWAYS be worried about his heart. I will ALWAYS be worried that this will happen again, anytime he gets sick. I will always be worried and be reminded that I almost lost him.
We are struggling to get his iron back up since he has lost SO much blood over the last few weeks, but he is happy and healthy and we are OVERJOYED.
- Officially crawling
- pulling himself up
- wants to eat EVERYTHING
- first hospital trip 😐
- still wearing 6-9 month clothes
- loves cheese and peanut butter sandwhiches
- has 6 teeth
- had his LAST first holiday: first EASTER
P.S. THOSE EYELASHES!