19 out of every 100,000 kids are diagnosed with Kawasaki Disease. My sweet baby is one of them.
I’ve been wanting to write about our experience with Kawasaki Disease up to this point. But honestly, sitting down and thinking about it all has been a little difficult. And this blog is typically my happy place, you know? I don’t really like to dwell on the bad stuff. But sometimes the “bad stuff” is an important part of what’s going on in life and this blog is my place share just that. So here we are, on January 26th, Kawasaki Disease Awareness Day. I thought this would be a fitting day to share Landon’s story.
So, Kawasaki Disease. We first heard those words uttered in a hush, hush tone between two nurses in our room around day 5 of our hospital stay. My eyes widened. I stared a hole through the nurse without meaning to and she noticed me. “Have you ever heard of Kawasaki Disease?”, she asked us. Nate and I both shook our heads no and asked her to elaborate – in a right now PLEASE, sort of way. She gave a quick little explanation about it not being a huge deal if it’s treated in time and told us not to listen to her anyway. I jokingly (but not) told her that we were going to Google the crap out of it when she left the room and begged her to tell us more but I could tell it just really wasn’t her place and she wasn’t going to do it. I proceeded to lock myself in the bathroom to be alone with my thoughts – the worst thoughts imaginable. We had been there 5 days at that point and Landon was much worse and we were no closer to knowing what was wrong with him. He continued to spike high fevers and became severely dehydrated. By the time they finally decided to give him fluid his veins continued to collapse with every stick and they had to call in the NICU team to get the IV in him after many, many attempts. He was so sick and basically unresponsive.
We went to the pediatrician 5 days prior because my Mom and I noticed that he felt hot. I took his temperature under the arm and it was around 101. We were at the pediatrician for quite a while – they did several tests, gave him Tylenol and some antibiotics. The Pediatrician told me to monitor him over night, give Tylenol and come back in the morning. He wasn’t much better in the morning when we went back and he had started to develop a rash. In the end, our pediatrician said we really needed to go to the hospital to let them evaluate him and possibly do a spinal tap to rule out meningitis. He thought it was most likely a virus but it was nothing to mess around with since Landon was only 10 weeks old. So we went. We were immediately admitted, which threw me for a loop. I thought we would be evaluated first. I thought maybe they would check him out and tell us we were being paranoid – take Tylenol, go home. Wishful thinking.
I called Nate home from work on our way and so we spent afternoon and night number one in the hospital. Nate went home to get us our stuff to stay the night. We were still under the impression at that time that we would be there just over night. Not too long after Nate left I got a phone call from him. He was running a high fever and said he felt awful. He couldn’t come back to the hospital with a fever so my Mom stayed the night with Landon and I. I felt so out of sorts that night. I slept in my clothes in the “reclining” chair mostly and my Mom slept on the little tiny couch the transformed into the most horrible “bed”. I think we switched a few times. I felt so out of place in that tiny room that first night. It’s weird to think about how that room slowly transformed into something normal after 11 days. I can’t imagine the patients that stay for so much longer. You strangely settle in, you get used to which nurses work which shifts and you get excited to see your favorites, you memorize the TV channels and you start going to get your own bed linens, you figure out where the free pop tarts are and which days have the best menu options for meals, you figure out how to turn the IV alert off when it keeps beeping for no reason, you learn exactly how far you can carry your baby away from the bed with all of the wires attached to him.
Nate felt better the next day and was able to come back thankfully. We still aren’t sure what the deal was with that. The fact that he was sick made the doctors really think that Landon had a virus that they just couldn’t get to show up on any of the tests. At that point they still weren’t going to do the spinal tap. We wanted to avoid it if they really thought it was just a little virus. The idea of doing a spinal tap on a little baby scared me to death.
I could go through the progression of every single day but I won’t. It got bad. I truly feel that the staff didn’t really take the severity of his illness seriously in the first few days. They didn’t come in much or communicate very much with us about what the plan was. Every day it was like – “Well, he still has the fever. Guess you’ll be here another night.” type of deal. I understood that we were in a watch and wait type of holding pattern with the fevers but we really just needed more understanding of what they were thinking was going on. Once he was finally on fluids he started to get a little bit better but the fevers continued to spike after every dose of Tylenol wore off. I remember being told around on day 3 or 4 of our stay that if his fever stayed down we might be able to go home that day and I knew then that we weren’t being taken seriously. In the middle of the night he started vomiting uncontrollably and I remember Nate and I talking to each other about how horrible it would have been if we had agreed to have gone home earlier that day. I am still so thankful that Nate was there for every second. I can’t imagine how much harder it would have been if he had gotten sick for longer than the first night.
After day 5 we became more of a priority. He was hooked up to monitors that the nurses could watch/hear at all times. I insisted that they monitor him after some of the scarier moments we had and I still am not sure why I had to insist on something that seems relatively routine in a hospital. We had constant visits from his main doctors + their teams, the infectious disease doctor, several other specialists, etc. He did finally have to undergo the spinal tap to rule out anything in his spinal fluid and it looked fine. He had an echo of his heart done which also looked completely normal. They did ultrasounds of his stomach and even his thighs because he acted like his legs hurt when he moved them. The signs of Kawasaki Disease were there but only one or two symptoms presented at a time and never to the severity that the doctors normally look for. He had the rash which spread over his entire body, the red conjunctivitis in his eyes, a cough, swollen feet, chapped lips – but never all at once. He never developed the “strawberry tongue” and of course – the ECHO came back showing that his heart valves looked perfect and not enlarged – two of the most prominent symptoms. But Kawasaki Disease needs to be treated within a 10 day window for the best outcome for healing. So, once the fever continued on and no diagnosis could be made by the time we hit day 10 we came to the point where treating for Kawasaki Disease was the best option. They would rather treat for it just in case. It is treated with IVIG – immunoglobulin transmitted via IV. It took several hours and shortly after the infusion was complete he started to act and look so much better. It was insane how fast he began to get better. He even rolled over for the first time in the bed that night! I woke up and found him on his tummy! His fever came down and went away. They observed him over night and into the next day. When the doctors made their rounds the next morning they gave us the news we had been praying for – we could finally go home.
It felt so crazy to finally go home. I had only stepped outside for fresh air twice in 11 days. I feel like we underwent the worst torment imaginable in those days we spent in that tiny back corner hospital room. The moments where it seemed like the worst possible thing would be the outcome – I honestly can’t even describe those moments to you. I don’t completely feel like that was me, like I really went through that. It feels a little bit like I was on the outside looking in. Landon gave me a single smile the first night we were there and then he didn’t smile at us again until after the IVIG treatment. His voice was completely gone from all of the crying and then he got to the point where he couldn’t even cry anymore. Seeing him start to get back to himself after the treatment was the best feeling. Going home was such a happy moment but I also felt very dependent on the hospital and a bit scared to be back home. Especially knowing that they couldn’t tell us what caused him to get sick in the first place.
We’ve had a handful of cardiologist appointments since his hospitalization. At the first appointment we learned of some bad news – his heart valves are enlarged after all. They are actually the size of an adult’s heart valves. Thankfully, the ECHOs showed that there have been no aneurysms. We had to give him 1/4 baby Aspirin once a day up until his last appointment in November. At that time they felt that his heart valves actually looked to be shrinking a bit, which is great news! They released us from monthly appointments – we go back in February for a follow up ECHO and check up. We expect that everything will look about the same. We have been told that he will most likely “grow into” his heart valves, vs them shrinking back down to a completely normal size.
We are so blessed to be on the other side of this with very little lasting effects. So thankful to have a children’s hospital right around the corner experienced in treating KD. This disease is rare and so many kids go misdiagnosed and untreated. It is typically treatable within the first 10 days and that is why it is so important to bring awareness to this disease. The clock is running and too many have run out of time trying to diagnose and treat the wrong illnesses. We are forever thankful to still have our sweet baby with us.
A Few Facts About Kawasaki Disease:
– Kawasaki Disease is most common in children 1-2 years of age. It is much more rare to see it in infants or older children, but obviously, it happens!
– 19 out of every 100,000 children are diagnosed with Kawasaki Disease.
– There is no test for Kawasaki Disease and the cause is unknown.
– Symptoms of KD are: Fever lasting at least 5 days, red eyes, body rash, “strawberry tongue” (red, swollen tongue), cracked lips, swollen feet and hands, and enlarged arteries.
– Kawasaki Disease is treatable within the first 10 days with IVIG (immunoglobulin transmitted via IV).
Please visit The KD Foundation for more information and to find out how you can help!