Monday, January 14, 2013

Jordan's Kawasaki Disease

In October of 2011 at the age of 5 my son Jordan came down with a fever that wouldn't go away. After 5 days and numerous visits to the doctor and tests he was diagnosed with Kawasaki Disease. Only 19 out of 100,00 children are diagnosed with it. There is little known about the cause of Kawasaki Disease so it can be harder to diagnose.
This was probably the hardest, scariest time of my life. I recently went back and read through things I had written down about what was going on with Jordan and it brought tears to my eyes. First the not knowing what was wrong with him. Then once we knew what it was the possibility of heart, brain and liver damage and series of tests were heartbreaking. My little man was so strong throughout all of it. We are still dealing with the after effects but hopefully he is mostly in the clear. Unfortunately there is not much known about the long term effects so we will continue to monitor him and meet any challenges that may arise.
The 3rd annual Kawasaki Awareness Day is coming up on January 26th so because of that I wanted to share the story of our journey with Kawasaki Disease.

+ Oct. 21, 2011: Jordan goes to school, has a field trip and we leave for a weekend at a cabin with friends. Shortly after arriving at the cabin Jordan throws up and starts to run a fever.

+ Oct. 22-23, 2011: Jordan continues to run a high fever and will not eat anything. He lays around and naps a lot.

+ Oct. 23, 2011: I take Jordan to Urgent Care since his fever is ranging between 103-104. The lowest I can get it with ibuprofen and Tylenol is 100.9. At Urgent Care they take chest xrays and swab his throat. The doctor concludes that he has bronchitis (he doesn't even have a cough) and sends us home. That evening I get him to drink some Powerade but he still refuses to eat.

+ Oct. 24, 2011: Jordan continues to have a high fever so I take him to our regular physician. They again can't find anything wrong with him and tell me that it is probably just a virus. He is still refusing to eat and barely drinks anything. That night his face started to turn red and swell.


+ Oct. 25, 2011: In addition to the other symptoms Jordan developed a slight rash on his back and pain in his legs. He no longer would walk anywhere he wanted me to carry him everywhere. Anyone that has ever been around a 5 year old boy (or any 5 year old for that matter) knows they rarely want to even be held by their mom's let alone carried. I distinctly remember telling my husband (who was working out of state at the time) that I was so frustrated because the doctors kept telling me there was nothing wrong with Jordan. I know my child and I knew something was wrong with him. This is my Facebook status from that day: I am so irritated with the doctor's that keep trying to tell me that nothing is wrong with Jordan... His fever is up to 103* the lowest I can get it is 100.9* and that's on Tylenol! I know my child and something is wrong... I just wish that they would figure it out soon...

+ Oct. 26, 2011: All of the symptoms continued so I took Jordan back to the doctor. This time they sent us for blood work. After they drew blood we were sent home to wait on the results. As soon as the results came in the doctor called and told me that they needed us to come back to the office right away. This is the first time I ever heard of Kawasaki Disease. I grabbed my phone charger and headed out the door. I had no idea what Kawasaki Disease was or how long we would be at the doctors, etc. I dropped Kate off at my mother in law's office and rushed Jordan to the doctor.
There they continued to run tests and finally confirmed that he had Kawasaki Disease and sent us across the street to the hospital to be admitted so they could treat Jordan with an IVIG treatment. The IVIG (intravenous immunoglobulin) is a treatment for Kawasaki patients that is required to try to prevent heart damage, requires the plasma of 1,000 blood donors. The treatment took 12 hours.
He finally ate for the first time in 5 days.

 
 
 
Jordan had to be hooked up to the IV all night and I stayed with him. This is my Facebook status from the next morning: UPDATE: It was a long night... From about 12-3 his heart rate dropped every 10-15 mins causing all the.alarms to go off. Around 4 his IV started coming out and it took them about half hour to get it fixed and strap his arm to a board... He finished the treatment around 6:15 and they drew more blood to test... We are waiting for them to come for the echo and some other tests on his heart this morning... I'm exhausted...
 
+ Oct. 27, 2011: Jordan had his first echo cardiogram that morning to check for heart damage. He still had symptoms throughout the day even after completing the IVIG treatment so they did a second echo cardiogram that evening. This is my Facebook status from that afternoon: UPDATE: Jordan is showing more inflammation/ Kawasaki disease in his bloodstream... They are having a specialist come in to do another echo around 5:30... We will stay another night and they will decide in the morning if they are going to do another treatment or not... He is in great spirits though!
And then: UPDATE: fever, redness, and swelling are back..

 

 
+ Oct. 28, 2011: Steve was able to fly home late the night before getting in at about 1 am on the 28th. 
That day Jordan had more blood work and we spent most of the day waiting to get results from his Echo. He was definitely feeling better at this point. This is my Facebook status from that day: Thank you everyone for your prayers, good thoughts and support... They drew blood again this morning to check the level of inflammation in his veins... We are still waiting to hear back on his echo and probably won't know anything until this afternoon... They are checking for heart damage and aneurysms...
We finally got to go home that evening around 6 but with strict instructions. We had to give him 4 aspirin every 6 hours around the clock. So we had to wake him up at midnight and 6 am as well as give it to him at noon and 6 pm. This would go on for the next 3 months. He also could absolutely not get the flu, a cold or chickenpox because of the aspirin treatment if he were to get those things he could get very, very sick. So he would be out of school for the next month and could only be around people that had their flu shot and had not been sick recently.


+ Oct. 31, 2011: We went back to the doctor to check in and get set up with a Pediatric Cardiologist in Portland that we would continue to follow up with. This is my Facebook status from that day:
Update on Jordan: We saw the doctor today. He is doing good we just have to be super careful. He can not get a cold or flu as he is too vulnerable so he will not be going back to school for awhile. He will continue to get blood work done once a week and echo's every few weeks. He will be on medication 4 times a day indefinitely... He also can't do much activity... If he were to start bleeding it would be hard to stop because he is on aspirin to thin his blood... Try telling a 5 year old boy he has to sit still and take it easy all the time... Thank you everyone for your prayers and support during this tough time...

+ Nov. 2, 2011: I took Jordan for his weekly blood work and once the results were in the doctor called and asked us to come in. I was definitely freaked out seeing as the last time I had gotten a call like that from the doctor Jordan was admitted to the hospital. We had been told that it was not uncommon for kids with Kawasaki to be readmitted to the hospital for a second round of IVIG. Luckily we didn't have to do that just continued to monitor him.

+ Nov. 8&9, 2011: Jordan went to Doernbecher's (the children's hospital that was about an hour from where we lived at the time) to have follow up echo cardiograms and appointment with the Pediatric Cardiologist. So far all news was good. He didn't have any heart damage but the results from blood work were still not back to normal. We continued with the aspirin therapy and made an appointment for another echo a few months later.

+ Near the end of November he finally got to go back to school after being out for 4 weeks.

+ Dec. 29, 2011: Finally Jordan's blood work came around so that he would no longer have to go for weekly blood draws! He was so excited about this!! He hated getting blood work but was such a trooper. Here is my Facebook status from that day:
Great news today! Jordan's bloodwork came back fantastic! He no longer has any inflammation in his veins... His white blood count is still a little high but nothing to worry about so as of now he doesn't have to get anymore bloodwork done... We will still continue to get echocardiogram's done and meet with the Pediatric Cardiologist. Hopefully during his next appointment towards the end of January they will reduce his meds from 4x a day to 2x a day. Thank you to everyone who has continued to pray for him and our family...
+ Jan. 19, 2012: We went back to Doernbecher's and got the best news! Jordan still had no heart damage. He could discontinue the aspirin therapy and would not have to have another echo for a whole year! This is my Facebook status from that day: Recieved great news at Doernbecher's today! So far Jordan still doesn't have any heart damage and everything is looking good. As of now we get to discontinue the aspirin therapy. I definitely will not miss waking up at midnight and 6 am to give him medicine. The next step is to keep an eye on his cholesterol and meet with a nutrionist to work out a heart healthy diet for him. I am feeling so blessed that after the last 3 months things are looking up! He continues to have joint pain in his legs and knees and some irritability issues... Hopefully with time these will decrease.. There is just so much unknown about Kawaski Disease that the long term effects are still unclear. Thank you everyone that has been praying for our family....
We had such amazing support from our family, friends and facebook friends during this time. So many people offering their prayers and help was something I will never forget. While we continue to live day by day and I panic anytime Jordan has a fever I thank God for getting us through that tough time. We keep Jordan on a heart healthy diet and he is very active in sports. The fact that longterm effects aren't really known does bother me. There is also the chance that he could die of a heart attack at a young age. But I don't let that stress me out. I know that God is in control and has a plan and I will thank him for each and every day that I have with each of my children.
 
Kawasaki Disease is most common in boys under the age of 5 but of course anyone can get it. The symptoms are as follows: : •persistent fever higher than 104°F (39°C) •severe redness in the eyes •a rash on the stomach, chest, and genitals •red, dry, cracked lips •swollen tongue with a white coating and big red bumps •sore, irritated throat •swollen palms of the hands and soles of the feet with a purple-red color •swollen lymph nodes •Joint pain •diarrhea, vomiting •vomiting •abdominal pain
Thank you for taking the time to read this and Happy January!! Remember January 26th is Kawasaki Disease Awarness Day! Please share the symptoms it could help save someone you love :o)


4 comments:

  1. Wow that is some crazy stuff your lil man and family have been through. I am so glad you had good docs at Doernbechers and that he is doing better. I hope he continues improving and that there are no lasting effects.

    ReplyDelete
  2. Thank you Mandie! We thank God everyday for his health! He has his one year follow up echo cardiogram on the 29th :o)

    ReplyDelete
  3. Wow! What a brave little man you have! I will be praying for his continued health improvements!

    ReplyDelete