We thought since there were so many wonderful people out there trying to support us during this difficult time that we'd create this blog to keep everyone updated in Jet's progress. I've mentioned before that my blog abilities are limited but since the hope for this blog is to be a temporary thing, I don't think that really matters! So...for those of you who aren't in Med school or already Doctors, we should probably briefly explain what we know about Kawasaki Disease (KD) thus far. So far there is no known cause for KD, although there are some very promising theories. KD symptoms include a fever that lasts more than 5 days and several of the following:
- Extremely bloodshot or red eyes (without pus or drainage)
- Bright red, chapped, or cracked lips
- Red mucous membranes in the mouth
- Strawberry tongue, white coating on the tongue, or prominent red bumps on the back of the tongue
- Red palms of the hands and the soles of the feet
- Swollen hands and feet
- Skin rashes on the middle of the body, NOT blister-like
- Peeling skin in the genital area, hands, and feet (especially around the nails, palms, and soles)
- Swollen lymph nodes (frequently only one lymph node is swollen), particularly in the neck area
- Joint pain and swelling, frequently on both sides of the body
- Irritability
- Diarrhea, vomiting, and abdominal pain
- Cough and runny nose
The bolded symptoms are the ones Jet presented with...some of them in the milder form.
Jet started with a fever on August 7th. We took him to Urgent Care and they speculated something viral. I told them that the whites of his eyes seemed a little red to me and they said that was most likely due to the fever. He had a Well-Baby appointment on the 13th and earlier that day he had begun to get a rash on his neck and behind his ears. We thought this to be a heat rash because of his fevers and because of the crazy heat waves we'd been having. Over the next 3 days, Jet's "heat rash" moved down his body...first neck area, then trunk area, then legs and feet. We brought him back to his pediatrician on the 15th and were told to keep track of his temperatures. Finally on the 17th, she called us and suggested we have him admitted. This is our 3rd admittance with Jet.
In short, doctors were confused. His KD seemed different. They weren't even sure it was KD but wanted to treat anyway because KD patients run the risk of heart attack if they're coronary arteries start to be affected by the disease. During the first admittance, Jet's echocardiogram was normal. During the second, there was one area that "might be of concern." The Dr. thought it may be an area of inflammation. During the third admittance we were told he had two heart aneurysms. One of more concern than the other. Jet kept being re-admitted because he kept having fevers after the treatments they were giving him. He wasn't responding to the typical treatment for KD kids. (This disease usually affects children under the age of 5.)
During this time, his doctors were in touch with a lady named Jane Burns. She's one of the world's top 3 experts on KD and just happens to be right here in San Diego. If we ever might have wondered why we ended up here, we now know. She has devoted her entire life to understanding this mysterious disease and treating it effectively.
Dr. Burns was pretty much treating Jet over the phone. Finally during his 3rd admittance she told them that if things were going to continue the way they had been then she would need to care for Jet personally over at Rady Children's. And here were are.
When you have a sick child, and you're sitting in the same room with a world expert, I think it's maybe having the same feelings as sitting in a room with...Channing Tatum...well maybe the female version of him! Well actually she's not the female version of him at all...but you get my drift! It's very exciting. :) She is so smart! We feel so blessed to have her so close to us.
With all of that said, we have a plan for care. For any body who really wants to know more about that...there's a study in The Journal of Pediatrics called Calcineurin Inhibitor Treatment of Intravenous Immunoglobulin-Resistant Kawasaki Disease. Jane burns is one of the authors.
If you go to jpeds.com and search her name it'll pop up...but I don't know how to have access to the full study. Ask one of your med buddies to help you out:).
Today's current update goes something like this...Jet's inflammatory markers are back up again (they had decreased a little yesterday.) These are called his CRP's and we want them below 1. Right now they're 7.3. His fevers haven't subsided. The next step is to test how much of the meds are in his system and if they're not at a theraputic level then they'll adjust accordingly. My thoughts are that they're not...they're too low and that the Dr. will decide to increase the dose. He is currently being given cyclosporine which is an immune suppressor that they use in transplant patients so that they're body does not reject the transplant. Thus far he's had two blood transfusions to correct his anemia and to make sure that his heart doesn't have to work so hard. His heart is inflamed and the goal is to get rid of that inflammation. He gets blood thinner injections every 12 hours (Lovenox) so that clots won't build up in his heart. The last echo done (the first one here at Children's) was done very will with Jet under sedation. Dr. Burns said that they can't see any aneurysms, but that the coronary arteries are both dialated pretty good. That's not good...but I think better than having an aneurysm from what I understand. Here's a video link that helps describes what happens with the heart in KD kids. http://www.youtube.com/watch?v=L9FmxwNC5S0
I think that pretty much sums up where we're at currently. I'll try to update as often as I can (usually while he's calm and sleeping.) Nate and I wanted to thank everyone who's been supporting us. You've been a huge help in keeping us strong and our spirits up. We love you all. P.S. the next post will have some pictures :) Here's an awesome website with tons of information!
http://www.pediatrics.ucsd.edu/Research/Labs/Kawasaki%20Disease/Pages/default.aspx
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