Day 34

So...I'm posting early since Jet is still asleep, and because I actually have GOOD news! CRP's are down to 3.2! That's the lowest they've been since he's been in and out of hospitals! That's down from 14.6 yesterday...a very promising drop. Remember, we want them below 1. The nurse said maybe one more day...not of being here...just of getting that number down. Whoo hoo! Well...since that's the best news we'll have all day, here's some of the things that will be happening in the next couple. So, just to review...

 

 

This is a picture of the left coronary artery with an obvious aneurysm. But notice that the rest of the artery is relatively normal. At Kaiser we were told Jet had two of these.

http://www.pediatrics.ucsd.edu/Research/Labs/Kawasaki%20Disease/KD%20Pathology/Pages/default.aspx

 

This is also a picture of the left coronary artery but the entire artery (at least the part shown) is dilated or "sausage-like" as we've been told. Since being at Children's this is what we've been told that Jet's arteries look like. The heart in this photo belongs to a man that was 42 years old and who had a massive heart attack. Coincidentally...when he was 5 years old, he was diagnosed with "atypical scarlet fever." KD hadn't been discovered yet and wouldn't be for 10 more years.

http://www.pediatrics.ucsd.edu/Research/Labs/Kawasaki%20Disease/KD%20Pathology/Pages/default.aspx

 

Keep in mind that at Children's, Jet's echo was done with him sedated...so the pictures are great. If Dr.s at Kaiser really saw two aneurysms then it's either likely they disappeared (I don't think so)...or the arteries became more dilated. That's my theory...but I don't know if that counts for much!

So...on Tuesday Jet will have a CT Angiogram. It will be done with low radiation and general anesthesia. This will be able to show the heart in more of a 3-D perspective. In these photos you'll be able to follow the arteries all the way around the heart vs. with the echocardiogram where you only get a sort of flat photo. He will have another echocardiogram on Wednesday. Jet's heart will be followed by Doctors throughout his life. Once the here and now gets under control he will lead a relatively normal life. Once he gets into his teenage and young adult years it is more likely that heart problems will surface again. The good thing is, San Diego is home to an excellent Adult Kawasaki Team (I don't think that's the official name of the group...but it sums it up fine I think) and constant research is underway. We hope that by the time Jet has to worry about that there will be plenty of studies and findings.

So far, researchers think KD patients more than likely are genetically predisposed and that some environmental cause (like a virus) triggers it. Dr. Jane Burns' goal is to get people in the know so that they can be informed and prepared as it is NECESSARY to treat KD within the first 10 days of onset. Patients treated within the first 10 days are less likely to develop heart problems. It is my understanding that if these can be avoided there is less to worry about as the patient nears adulthood. Though Jet was seen a few times during that 10 day period, other than his fever his symptoms were a lot less alarming in the beginning than most KD symptoms. Okay...I think that's all for today! Today will most likely be a boring day for us and boring is good!!!