We're home!!! We were discharged last night around 6pm. We had a little mishap with getting the prescriptions but finally worked that out. We don't have details on the his echo yet because Dr. Burns hasn't had a chance to call us yet, but she said everything looked great and that we didn't have to give him the Lovenox injections (blood thinner) anymore. Instead we can give him an oral blood thinner...which is such a relief! When we left, Jet's CRP's were 0.8. His cyclosporine levels were still high so they decreased the dose again. If we could get through all of this without Jet having too many side effects from this steroid, that would be great! It's not over yet! We're just controlling things from home now. Which we'd much rather do.
We slept pretty well last night and Jet's napping now. Trying to get him back on his schedule.
We'll probably just take it easy over the next few days and get back into some type of routine. I'll still post things as we find them out...like the details of his echo. In light of all of this we're actually going to have an echo done on Dax as well. Just to make sure he looks good.
We wanted to take the opportunity and thank you all for your support through all of this. We have some wonderful friends and family members and we know this!!! Thank you, thank you, thank you! We love all of you so much.
Tuesday, September 18, 2012
Sunday, September 16, 2012
40 days and 40 nights!!!
Super short tonight! Jet's CRP's were 1.3 today!!! Whoo hoo! And we'll most likely be coming home tomorrow! They've arranged to do the echo tomorrow instead of Wednesday...they drew blood for labs tonight instead of in the morning so we get an extra hour of sleep...another plus. Hopefully his cyclosporine levels are in the therapeutic range because if they're not, we're staying until they are. I'm anxious to see the results of the echo...I hope there's more good news concerning that. I think that's it for today. Not a whole lot to report...but we're okay with that.
Saturday, September 15, 2012
Day 39
These posts have been rather late...but this little man has been hard to get to sleep. Today was about a whole bunch of questions...on our part...on the doctors part. Not a whole lot to post about. Jet's CRP's were 4.3, so that's good news. Hopefully they stay on the downward trend. His rash was a lot less apparent today, probably because they lowered his dose of cyclosporine. However, the levels of cyclosporine in his blood were still pretty high and not yet within that therapeutic range. They skipped tonights' dose and plan on starting again tomorrow but with 20 mg instead of 35mg. So this will be our third decrease of the oral because he started on 54 mg. Dr. Burns is a little "mystified" as she puts it. She said he's an official cyclosporine failure! Don't be confused like I was...there is still purpose in him receiving it as part of his daily regimen for the next six weeks, it's just that it didn't have the affect on Jet like it had on her other patients and that's what she means by "failure." I think that's about it for today...I figure the less eventful, the better! And because I wouldn't be able to really put it into words...this is how Jet pooped tonight. I actually give him high marks for his technique.
Friday, September 14, 2012
Day 38
Today was eventful. So Jet's CRP's were 6.6...still on the climb. And...in addition to that he's developed a new rash. It comes and goes but does this consistently almost 2 hours after his oral dose of cyclosporine.
These pictures were actually taken yesterday and the day before. I didn't get one today but it was much worse. It stays for a couple of hours and then goes away. It's interesting in its onset because it just so happens to present at the same time the Dr. wants labs for the peak levels of cyclosporine in Jet's body. We'll be talking to the Dr. some more about this.
Speaking of peak levels...we received the results of Jet's peak and trough levels...trough right on target and peak too high. So...we've come to the conclusion that the cyclosporine is not working and was most likely not the reason for the decline in Jet's CRP's. It was most likely due to the Methylprednisolone. Dr. Burns has opted to decrease the cyclosporine dose (this did not help the rash) and start giving the steroid (MP) again...also orally. We'll see how this works. She's decreased the dose of the steroid by half. Since it is a steroid I think the lower we start the better. We can always go up.
I don't imagine Jet's CRP's will reflect the steroid tomorrow morning. I think that will be Sunday's news. Needless to say we'll be here through the weekend for sure.
We had a rough night last night (Thurs.) because...well be because of a certain health care professional wanting to do unnecessary things at midnight. So tonight Jet is OFF of his monitor and not being disturbed between the hours of 8pm and 6am. HOLY HALLELUJAH!
Thursday, September 13, 2012
Day 37
We've had a slight setback today. This morning we found out that Jet's CRP's were 2.1. They're obviously not explosively high, but they are higher nonetheless. You can imagine how disheartening that was for us. So I just got done talking with Dr. Burns and she said she was on the fence about the next step and asked me what I wanted to do. At first I was freaked...I didn't want to make that sort of decision, I mean that's why I'm here, right? But then I reasoned and realized that either decision is probably going to be okay considering she is offering me a choice in the matter.
The choice is this. Keep him on his oral dose of cyclosporine and since tonight is his 3rd oral dose we would test the "peak" and "trough" levels in his blood. Then, if necessary, we would increase his oral dose. Dr. Burns seems to think this might be the case because Jet is a little more on the what you might call "robust" side of the spectrum. Since first admitted here we have had to increase his IV cyclosporine dose once. So maybe also with the oral? Let's hope.
The other choice would be to put him back on the IV dose because we know it's working. Well, since I eventually would like to give up living in hospitals, I told her since tonight happens to be his 3rd oral dose (you typically test peak and trough levels on the 3rd dose...at least with the cyclosporine) let's just check out those levels since we'll have to eventually figure that out before we got home anyway. So that's the plan so far. I imagine if his levels are in the theraputic range she'll put him back on the steroid, but wants to avoid that if we can.
Here's what I've learned, and for those of you who understand...you can let me know if I'm understanding this correctly. Kawasaki Disease itself is not a chronic illness but it can cause such because of the damage it can do to the heart's arteries. KD is more of an acute illness in that it comes on suddenly, runs its course, and then goes away. Key words...then goes away! I did not totally understand this until today. So, we are not trying to cure Jet from KD, we are treating him while he has it so that it doesn't do irreparable damage to his heart. So this is good news to me, about the only good news we got today. Dr. Burns seems to think that within about a weekish Jet's KD should have run its course given the time frame he's had it already. With that said, he will still be on his medications for several more weeks.
What I've noticed since learning that his CRP's have increased a little is that he's a little warmer today. He hasn't gotten a fever yet, but my gut tells me that he may tonight and nurses have been instructed to treat him with Tylenol. I guess we'll know more in the morning. I hope his CRP's won't increase rapidly through the night. All fingers are to be kept crossed! :)
The choice is this. Keep him on his oral dose of cyclosporine and since tonight is his 3rd oral dose we would test the "peak" and "trough" levels in his blood. Then, if necessary, we would increase his oral dose. Dr. Burns seems to think this might be the case because Jet is a little more on the what you might call "robust" side of the spectrum. Since first admitted here we have had to increase his IV cyclosporine dose once. So maybe also with the oral? Let's hope.
The other choice would be to put him back on the IV dose because we know it's working. Well, since I eventually would like to give up living in hospitals, I told her since tonight happens to be his 3rd oral dose (you typically test peak and trough levels on the 3rd dose...at least with the cyclosporine) let's just check out those levels since we'll have to eventually figure that out before we got home anyway. So that's the plan so far. I imagine if his levels are in the theraputic range she'll put him back on the steroid, but wants to avoid that if we can.
Here's what I've learned, and for those of you who understand...you can let me know if I'm understanding this correctly. Kawasaki Disease itself is not a chronic illness but it can cause such because of the damage it can do to the heart's arteries. KD is more of an acute illness in that it comes on suddenly, runs its course, and then goes away. Key words...then goes away! I did not totally understand this until today. So, we are not trying to cure Jet from KD, we are treating him while he has it so that it doesn't do irreparable damage to his heart. So this is good news to me, about the only good news we got today. Dr. Burns seems to think that within about a weekish Jet's KD should have run its course given the time frame he's had it already. With that said, he will still be on his medications for several more weeks.
What I've noticed since learning that his CRP's have increased a little is that he's a little warmer today. He hasn't gotten a fever yet, but my gut tells me that he may tonight and nurses have been instructed to treat him with Tylenol. I guess we'll know more in the morning. I hope his CRP's won't increase rapidly through the night. All fingers are to be kept crossed! :)
Wednesday, September 12, 2012
Day 36
Today was a good day as far as news goes. So what's that? Two days in a row? Jet's CRP's were 0.5. That's below 1, which means we've reached our goal. Yay!!! He's now able to take his meds orally instead of IV. They took him off of the steroid which is good because steroids can wreak serious havoc on the body. They said after about a week we would've started noticing side effects...so thankfully he was only on them for about 3 or 4 days.
Also...he had his Echo today. They sedated him with some oral sedative and let me tell you...if I could get my hands on some of that. I've been trying to decide which nurse I should get in good with here. Dr. Burns came in to talk to us about the results and she said if we were going to get any good news about the echo that the news we got would have been just that! His little arteries have decreased in size...one of them a whole mm, which she said is HUGE! There is one area that has a slight bulge...and we're going to keep our eyes on it. I would have to figure out how to draw this and upload it for you all to see...but for tonight I'll just tell you it could be so much worse! If he has to have a bulge I think it's better to have it where it is. He has another echo scheduled for next Wednesday and some more labs to make sure he's staying on the right track. He was in a wonderful mood today, and he's gotten some good sleep. Sleep I envy!
I think that's about it as far as today's updates go. I know there are a lot of prayers going on out there...so many people of various faiths. Thank you so much. I know Heavenly Father hears those. We are so grateful to have such wonderful friends and family members who love us. Jet is such a lucky baby. We are so fortunate to have such a beautiful little boy. Actually, we have two!
Also...he had his Echo today. They sedated him with some oral sedative and let me tell you...if I could get my hands on some of that. I've been trying to decide which nurse I should get in good with here. Dr. Burns came in to talk to us about the results and she said if we were going to get any good news about the echo that the news we got would have been just that! His little arteries have decreased in size...one of them a whole mm, which she said is HUGE! There is one area that has a slight bulge...and we're going to keep our eyes on it. I would have to figure out how to draw this and upload it for you all to see...but for tonight I'll just tell you it could be so much worse! If he has to have a bulge I think it's better to have it where it is. He has another echo scheduled for next Wednesday and some more labs to make sure he's staying on the right track. He was in a wonderful mood today, and he's gotten some good sleep. Sleep I envy!
I think that's about it as far as today's updates go. I know there are a lot of prayers going on out there...so many people of various faiths. Thank you so much. I know Heavenly Father hears those. We are so grateful to have such wonderful friends and family members who love us. Jet is such a lucky baby. We are so fortunate to have such a beautiful little boy. Actually, we have two!
Look what I found! Dax...hospitalized. He makes it look so cool.
And I just love this one.
Tuesday, September 11, 2012
Day 35
So...today we did nothing! Which is okay because Jet is still improving so that's all that really matters. His CRP's were 1.2 today and Dr. Burns seemed very happy about that (she high fived me). We were scheduled to do the CT Angiogram and an Echocardiogram but things changed literally overnight. They can't do the CT Angiogram while Jet has a PIC line, and since we WILL NOT be taking that out, the angiogram will have to wait. Dr. Burns has opted to have it done as an outpatient service in about one month. She said that will give his little veins some time to heal. The poor kid is such a hard stick...nobody can find veins on him because he's soooo chunky! I'll take the credit for that :).
We were still going to go ahead with the echo this morning so they told me not to feed him after 4:00am because the echo was scheduled for 9:00am and they were going to have to sedate him. Last night nurses and resident doctors became a little concerned because Jet's temperature was pretty low as was his heart rate. I don't know if you all are familiar with the monitor in a hospital room but essentially when you're hooked up to it, it measures your heart rate, your respirations, and your oxygen. Jet's heart rate stayed in the 70's and low 80's...sometimes going down to 60. With that and a low temp. they didn't feel comfortable sedating him. So they did an EKG instead. It was normal.
I talked with Dr. Burns this afternoon. She wants to increase his Lovenox (blood thinner) because she said the levels in his blood were low. She wanted to start him on the oral steroid but later had a change of heart after talking with another doctor and decided to take him off of it completely. She said the cyclosporine levels in his blood are perfect. She wants to go ahead with the echo in the morning so we're back to not eating after 4:00am, which makes for a lovely morning as I'm sure you can imagine. Dr. Burns seems to think that the low temperature and slow heart rate are a result of the steroid, so we'll see how he does tonight. He is wearing clothes today! Poor kid...normally he gets heated pretty quickly so he's always wearing a light layer. With all the fevering he's pretty much just been in a diaper. Today we put him in some sweats, a tee shirt, and some socks. Poor baby just needed some clothes!
All in all he's doing wonderful today. He's had some good sleep and he's warm :).
We were still going to go ahead with the echo this morning so they told me not to feed him after 4:00am because the echo was scheduled for 9:00am and they were going to have to sedate him. Last night nurses and resident doctors became a little concerned because Jet's temperature was pretty low as was his heart rate. I don't know if you all are familiar with the monitor in a hospital room but essentially when you're hooked up to it, it measures your heart rate, your respirations, and your oxygen. Jet's heart rate stayed in the 70's and low 80's...sometimes going down to 60. With that and a low temp. they didn't feel comfortable sedating him. So they did an EKG instead. It was normal.
I talked with Dr. Burns this afternoon. She wants to increase his Lovenox (blood thinner) because she said the levels in his blood were low. She wanted to start him on the oral steroid but later had a change of heart after talking with another doctor and decided to take him off of it completely. She said the cyclosporine levels in his blood are perfect. She wants to go ahead with the echo in the morning so we're back to not eating after 4:00am, which makes for a lovely morning as I'm sure you can imagine. Dr. Burns seems to think that the low temperature and slow heart rate are a result of the steroid, so we'll see how he does tonight. He is wearing clothes today! Poor kid...normally he gets heated pretty quickly so he's always wearing a light layer. With all the fevering he's pretty much just been in a diaper. Today we put him in some sweats, a tee shirt, and some socks. Poor baby just needed some clothes!
All in all he's doing wonderful today. He's had some good sleep and he's warm :).
Monday, September 10, 2012
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.
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.
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!!!
Sunday, September 9, 2012
Day 33
Last night went well because Jet didn't have ANY fevers. He remained cool through the night and slept pretty well. At 4am the nurse drew labs and gave him his second dose of methlprednisolone (MP). At about 9am our nurse came in to inform us that Jet's CRP's were 14.6, which obviously means they doubled from yesterday. They have never been this high. Thus far, Dr. Burns is increasing the cyclosporine dose because "peak" levels in his body were low. "Peak" levels and "trough" levels must be in a theraputic range in order for the drug to be effective, which is why she is increasing the dose. Dr. Burns also informed us yesterday that the important labs to consider (though they're all important) will be the ones taken at 4am tomorrow morning. This is because he will have had his second dose of the steroid (MP) and she anticipates seeing some sort of drop in those inflammatory markers. We sure hope so!!! Jet has been in a wonderful mood for the entire day.
This is the 2nd rash that Jet got. It was because of this rash and his swollen hands and feet that we took him to the emergency room.
This is right after he received his pic line. He slept for almost 24hrs.
This is big brother...being a good sport. Actually, he'll do whatever you want for a Ritz cracker. Thanks Ryan!
Jet's first hospital bath! And just so you know...this weight gain was all pre-steroid!
This was during Nate's watch...hmmm.
Jet and Dad. What a couple of hunks!
Jet and Mommy.
This picture was taken during our 2nd admission at Kaiser...but I just wanted you all to know that Nate and I wish we could sleep this good!
Saturday, September 8, 2012
Day 32 (continued)
Okay, so I think I'll post at the end of every day because some things have happened since the last post already.
Dr. Burns came in today and was not happy about the CRP's. She was talking with a couple of doctors who specialize in a couple different areas and they all agreed that further action was needed. Jet is not responding to the cyclosporine.
So in addition to that, they're adding a steroid to his treatment. He will be receiving "gentle" doses of methlprednisolone. If any of you are familiar with Dax's unknown fevers...this is the same thing they prescribed him and it was amazing! There are some side effects of the steroid (hypertension and gastrointestinal bleeding) but at this point the benefits outweigh them. This will make him a little more hungry and he could put on some weight. What! Jet...put on weight? I don't think he knows anything about that.
So we should know a little more tomorrow. Dr. Burns said we should see some improvement (hopefully) after the first two doses. Dose 1 was given today at 4pm and will be given again at 4am tomorrow morning(9/9). We really want this to work.
Because of the steroid...we are limiting visitors to just Nate and I. This steroid will make Jet's little immune system even weaker so we don't want any extra germs!!! :) I know you'll all understand. Thanks again for all your support.
The Whann's
Dr. Burns came in today and was not happy about the CRP's. She was talking with a couple of doctors who specialize in a couple different areas and they all agreed that further action was needed. Jet is not responding to the cyclosporine.
So in addition to that, they're adding a steroid to his treatment. He will be receiving "gentle" doses of methlprednisolone. If any of you are familiar with Dax's unknown fevers...this is the same thing they prescribed him and it was amazing! There are some side effects of the steroid (hypertension and gastrointestinal bleeding) but at this point the benefits outweigh them. This will make him a little more hungry and he could put on some weight. What! Jet...put on weight? I don't think he knows anything about that.
So we should know a little more tomorrow. Dr. Burns said we should see some improvement (hopefully) after the first two doses. Dose 1 was given today at 4pm and will be given again at 4am tomorrow morning(9/9). We really want this to work.
Because of the steroid...we are limiting visitors to just Nate and I. This steroid will make Jet's little immune system even weaker so we don't want any extra germs!!! :) I know you'll all understand. Thanks again for all your support.
The Whann's
Day 32 with Atypical KD
Hi Everybody!
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:
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
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
Subscribe to:
Comments (Atom)