Update On The Lil Man

Some of you may know that my youngest little guy had been diagnosed with Kawasaki Disease this happened in May 2 weeks after he turned 1.
 We have been seeing a pediatric cardiologist since then to have EKG's & Echo cardiograms on his heart. Kawasaki Disease can affect the child's heart unfortunately for C he developed a small aneurysm on his left coronary artery. So we have been watching the progress of it. He was on a high dose of baby aspirin but at our appointment in July they took him off that as his aneurysm began to shrink.

If you want to read about all we went through & gain a little more knowledge on Kawasaki Disease you can read Part 1 & Part 2 


I thought first I'd share some pictures of how our routine appointments at the cardiologist go first they weigh & measure him & take his blood pressure (I didn't take any pics of that).

Next comes the EKG:

Then after the EKG we move onto the Echo Cardiogram:

So what did they find.....????

His aneurysm is gone!! Thank the Lord!!!  The cardiologist told me I could breathe again! I was soo happy!!! We are still keeping a journal of his joint issues both with his pediatrician & his cardiologist.  But, the main thing is his little heart is back to normal.  Even though his aneurysm is gone we still will have follow ups with the cardiologist for a long time we don't have to go back for another 6 months :)

So I'm a happy happy mommy right now :)

And The Outcome Is.....

GOOD!!! So you may be wondering what am I talking about! Well I am talking about my son's 6 week follow up with his cardiologist! He was in the hospital 6 weeks ago because he had been diagnosed with Kawasaki Disease.

He had an echo cardiogram when he was in the hospital everything looked perfect, then at his 2 week follow up appointment he had enlargement to his left coronary artery (aneurysm ).


Today was his 6 week follow up & I was nervous and had a twisted stomach all day. We got there & they were running behind (it happens). They first did height & weight little stinker is almost 20lbs & is a little over 29 inches tall! Then they did an EKG on him. The nurse was so sweet & was blowing bubbles to keep him still!

Then came time for the echo & boy was I nervous this is where we would get an answer to what was going on with lil man's heart! Once the lady was done it was back to the exam room & wait for the Dr to review (it seemed like forever).

In came the Dr with GOOD news his aneurysm had shrunk down & he felt comfortable taking him off of his aspirin. WOOHOO!!! No more pumping aspirin into my little guy
& his heart was returning to normal!! We go back in 8 weeks!!

Now I still have some concerns about his joints so we will have to have a follow up with his normal pediatrician but for now I am one happy momma!!

Oh we also had a house showing today we literally got home within 15 minutes before they were scheduled to come so we had to load up the other 2 kids & the dog. The people were early so everything was not as perfect as I wanted to be but ya win some & lose some so we shall see what happens.

Now I can enjoy our trip to Busch Gardens & to NY (Western NY Buffalo area). Thanks to all that have been thinking or praying for my little guy means a lot!!

I have Fear but I Have to have Faith

Well were approaching little man's next appointment with the cardiologist! It's on Monday to be exact! I'm nervous & fearful. I have that awful feeling in the pit of my stomach that nothing has changed. That he still has an aneurysm. I'm fearful that it could be worse. I'm fearful that he may need long term medicine.

If your new to my blog well you are probably wondering what in the world I am talking about & what is wrong with my child. If that is the case my now 14 month old son was diagnosed with Kawasaki Disease on May 29th.  You can read our full story Here & Here

It was rough & then having to wait 2 weeks for a follow up appointment with the cardiologist wondering what they would see. Well they saw enlargement to his left coronary artery which they call an aneurysm. The Dr said it could resolve by his next appointment which is Monday!

So now you can understand my fear of what Monday will bring! I have fear for what kind of obstacles my son may face & what his future with this disease may bring. There is so much unknown about the long term affects of this disease (which drives me absolutely nuts).

I search the Internet for hours many nights trying to learn & understand more. I have support groups where we all talk & some children are doing just fine other's are losing hair, have joint pain, get sick a lot, some are still on long term med's (aspirin or other anti-coagulants, some steroids) So it's basically like the mystery disease. What will it do to my child? (I don't know)

So many Dr's have said it is very unlikely to have another "flare-up" yet I have read about more children having 2nd bouts with Kawasaki Disease since finding other parents in my situation (it is so    frustrating to not have answers).

Through all of this fear I have to remind myself to have Faith. Have Faith that he will be ok, that they will find the answers to this "Mystery Disease" I think at this point having Faith is the only thing getting me through all of this. I need to have Faith that his heart will be ok if not through it's own healing that it will be through medicine.

Will update everyone of what we find out from Monday's appointment.

Follow up with the Cardioloigst

So yesterday Carsen had his 2 week follow up with the Cardiologist. After the almost hour drive we get there go to check in & the receptionist  tells me my appointment is not till July 12th at 2pm & my blood starts to boil because um no!

I was told he had to have a follow up 10-14 days after with the Cardiologist & on my discharge papers it said June 12th. I was trying to remain cool I do have a temper when things go wrong when it deals with my children. I politely said um no it's today it said so on my hospital papers. She then called another lady & they looked into it & said yes it was supposed to be today but it got put in wrong they were sorry & would get him back shortly! Sigh of relief because I was not leaving with out my son seeing the DR I'm not messing around with his heart!

So they get us back they weigh, measure & take his blood pressure & then we all go into a room & they do and EKG the Nurses both said he was so well behaved they wish all the kids were as good as him (pat on the back lol) no Carsen is just a very easy going child. Thank Goodness because Brycen is NOT!

Then comes time for his echo so we go into another room & the tech. starts moving the little wand over his heart checking it all out!! Again pretty cool to see! I have this knot in my stomach it's been there since the drive just worrying.

Back to the room to wait for the Dr. Carsen is walking all around trying to get into everything! Pulling daddy's sun glasses off his head and trying to put them on himself. (he's so cute).

Knock knock & in comes the Doc. (so super nice) shakes my husband's hand and mine. Asks how Carsen has been acting & feeling. I explain he's doing well eating, sleeping & playing though he does seem more tired.

He then tells us that Carsen has a slight enlargement to his left coronary artery since his initial scan & I think I go white at this point! He tell us it is a little large for his age but it may fix its self by the time of the next scan in 5weeks! He said we could reduce Carsen's dose of aspirin from 2 every 6 hours to a 1/2 once a day! So at least he's not having to take a ton of that anymore.  The Dr. goes on to ask me if I have any questions. I had a million but all of a sudden my mind was blank!

I did ask if the aspirin could have any long term affect on him I was worried about Reye's Syndrome as well he told me not to worry about that. I asked if it could affect him later he said that he will need scans of his heart for probably up until 5 and then around 12 and maybe even as an adult. He gave me a source to read it was long and it was technical but I basically gathered the same information I already had.

They still don't know a whole lot! I did read that yes it is possible for his heart to get better by the next scan but if not he will be on long term medicine to prevent serious damage. So then my brain goes to the worst of course! I want to remain positive but it's hard with all that has happened I was hoping for everything to still be good at this scan & it wasn't :( so its hard to want to be positive plus what if I tell myself everything will be fine & then it's not? Neither way of thinking will help me right now!! 

We will just take it day by day till July 15th when we go back! & I will just snuggle and love on my little guy 24/7 this kid is going to be the ultimate mommas boy lol!

In other news cause you know we don't already have enough going on! I had to go have a HIDA scan on my gallbladder today! My Dr. is worried about its functioning since I had some issues a bit ago! That was fun let me tell you not!

I felt like I was stuck in a tanning bed without all the nice warmth, & then injected with this stuff that made me feel like I was going to barf all over FUN TIMES!! That was a whole 2hour process! So now I wait for results!! Always something around this place I tell you!!

Soon I will post about a couple of cute little tables I painted should have awhile ago but well hey if you've been fallowing you know where my priorities have been.

Till next time

-Candice-

Did you know? -Kawasaki Disease

If you want to know why I'm so adamant about raising  awareness for Kawasaki Disease you can read about my son's story here:
http://mylittlecircusandme.blogspot.com/2013/06/kawasaki-disease-nightmare-i-never.html


Did you know John Travolta's son  had Kawasaki Disease as a young child?

Did you know Sarah Chalke (from Scrubs & currently ABC's How to live with your parents for the rest of your life) -Son had Kawasaki Disease?

I didn't know this until I was playing on Google to learn more & came across articles about both their children! Both boy's! Kawasaki tends to affect boy's more than girls & usually children under 5!

I also came across this little 3year old boy's story:
http://www.thedenverchannel.com/lifestyle/health/kawasaki-disease-looks-like-a-virus-but-could-cause-permanent-heart-damage-in-children

I love how some people think it could be because of a Virus yet at one time they thought it was potentially linked to carpet cleaning! (which they learned it is not).

I'm so sick of everyone saying maybe a Virus, Everything is a Freaking Virus these days!! Well I call bullsh*t on the it could be some virus!

No I am not a Dr. I don't have a PHD or any fancy smanchy degree but I have read a lot & even the damn Dr's & scientist's don't know where Kawasaki comes from or how!

Yet I have read many articles saying they do believe it is an Auto-immune disease but they just don't have enough research to prove it yet & the fact that Auto-immune disease's are tricky!!

But the fact that Kawasaki tends to favor boy's more & the under 5 age & all the reading I have done says they think it could be gene related & children with certain genes are at a predisposition to get Kawasaki Disease. Makes me feel it is Auto-immune along with many others. They know its not contagious so how the hell could they even think it's a virus HA!

The fact that I have many family members with Auto-immune disease's also makes me feel that others are right in saying Kawasaki is an Auto-immune disease.

What is an auto-immune disease? :
Autoimmune diseases arise from an inappropriate immune response of the body against substances and tissues normally present in the body (autoimmunity). This may be restricted to certain organs
http://en.wikipedia.org/wiki/Autoimmune_disease

Kawasaki Disease affects the small & medium sized arteries in the body causing inflammation & it can cause serious issues to the heart!! -Sounds like an Auto-immune disease right?

They treat Kawasaki disease with IVIG : Which they also treat patients with auto-immune disorders with.
I was told that if Carsen's 2nd round of IVIG didn't work they were going to use a drug that is used for patients with Rheumatoid Arthritis (an auto-immune disease) Hmm...


So why is it so hard to get a straight answer? WHY? Why is children's medical funding & research pushed down to the bottom? WHY? Children are the future!!! There needs to be more funding for Child Medical research. There needs to be more research for Kawasaki & more funding!!

Recently we did a fundraiser under Sara Chalke to raise money for Kawasaki Disease:
http://www.crowdrise.com/kdchallenge/fundraiser/candiceschurr you can still donate!!

Thanks to Friends & Family our little team alone Raised:

 

Today we go back to the Cardiologist for another Echo cardiogram were praying for good results even if he gets good results today we will still be getting scans up until he is at least 5!

 

I will never be ok even if they say he looks good I will continue to worry for every next scan, I will worry that this will pop up again & I will worry as he gets older that he could be affected. There is too much not known about this disease & especially not enough information based on later effects in their adult life.

Until tomorrow

-Candice-

Kawasaki Nigthmare -Part 2

If you didn't have a chance to read part 1 you can here: http://mylittlecircusandme.blogspot.com/2013/06/kawasaki-disease-nightmare-i-never.html

So I will begin part 2: we made it through the first night in the hospital & Friday morning May 31 he was feeling much better now fever free eating & smiling!  My hope was restored but he still needed his Echo cardiogram & it  had to be 24 hours after finishing the IVIG & fever free for 24-36 hours before they could send him/us home.  Still continuing the Aspirin therapy which is given every 6 hours.

So around lunch time the Cardiologist came in with the tech girl & she was taking pictures of his little heart, seeing my babies heart beating & moving was pretty neat! But I was terrified that something was going to be wrong. See the side affects of Kawasaki are : 

 

Inflammation of the heart muscle (myocarditis)

Heart valve problems (mitral regurgitation)

Abnormal heart rhythm (dysrhythmia)

Inflammation of blood vessels (vasculitis), usually the coronary arteries, that supply blood to the heart

Any of these complications can damage your child's heart. Inflammation of the coronary arteries can lead to weakening and bulging of the artery wall (aneurysm). Aneurysms increase the risk of blood clots forming and blocking the artery, which could lead to a heart attack or cause life-threatening internal bleeding.
For a small percentage of children who develop coronary artery problems, Kawasaki disease is fatal, even with treatment. http://www.mayoclinic.com/health/kawasaki-disease/DS00576/DSECTION=complications

Scary HUH??? Ya my point exactly!!!

The cardiologist informs me that Carsen will have to have another Echo in 2 weeks then 6weeks & then 6 months & up until he is 5years old to make sure he never develops or developed a complication from Kawasaki. Thankfully during his scan that day everything looked good!

My husband was off of work to stay home with our other 2 boy's as I refused to be away from my sick baby boy he needed me & I him! My mother in law decided to come down & help us & flew in Saturday so she could be there for the boy's & help around the house!! She has no idea how grateful I am to her for that.

Saturday June 1st- My Mother in law flew in around Noon & then everyone was coming up to visit I was so excited to see my other babies I have never been away from them that long even when Carsen was born I only had to stay overnight! I missed their crazy behinds so so much!!
 Well while waiting for them to get to the hospital, I got exciting news... Carsen had been fever free 32 hours & his symptoms had gotten much better so they decided we could go home (I had not shared this with anyone but my parents till now) So we went home Saturday June 1st at 2pm it was great to be home until 5pm hit!
  At 5pm after a nap Carsen woke up burning up & his fever was back 101.6 his Rash flared back up his Lips were bright Red again & his Eyes blood shot again! I started Crying because I knew what this meant we were going back to the hospital!! I called & spoke with the Cardiologist & he said you know what I'm going to tell you right?? & I knew we were going back.
His other Dr that had been seeing him at the hospital also called me and said pack a bag you have to come back. So I packed a bag & off to make the 45min drive again!  A screaming baby who felt awful once again.

Once we were back they again weighed, measured & took his temperature at this point it was 104. I was so upset once again my poor baby had to get an IV and this time it took 2 tries it was AWFUL he was screaming & struggling & finally he was so tired & sick he passed out. Then came time for medication..
Tylenol to reduce fever Aspirin for his therapy for anti-inflammatory (my understanding is also to reduce clotting purposes like that of an adult taking aspirin), Benadryl to reduce any possible itchiness for another dose of IVIG! another 8-12 hours of a drip. More Dr's to speak with. They said sometimes kids need more than one dose of the IVIG & apparently Carsen was one of the Few!
This time they kept his drip on a slower pace so he didn't go through the shaking like the last time! More sleepless hours of holding a sick baby whom I did everything I could for to make comfortable. It is amazing how a mothers body can go days with out sleep and constantly rock & hold a baby.

Sunday June 2- At 10am Carsen was done with his IVIG and he once again seemed to be feeling better!! The cardiologist came in to visit us & informed me he had seen only one other little boy spike a fever again after 30+hours & require a second dose of IVIG he said hopefully Carsen would be good after this second dose or our next step would be using a medication that is used for treating rheumatoid arthritis.
The Cardiologist said that this time we would not be leaving until a full 48 hours after his IVIG treatment. Which would mean Tuesday at 10am. This was a special day as well because we were asked by the Hospital to be interviewed by the Children's Miracle Network & be on the News!! Which I of course agreed I wanted others to hear about Kawasaki! If I can figure out how I will upload the clip!

Monday June 3-Was a great day my baby was now playing, the hospital was great & even brought him in toys to entertain him & daddy left him the ipad so he could play on that as well. It was pretty hard trying to keep a 1yr old who was attached to a bunch of wires in a certain area they brought us blankets so we could play on the floor & eat there. We skyped with his brothers & I got teary eyed as they were talking to each other I missed them & they missed their baby brother! Monday night went pretty good he slept the best he had in over a week.

Tuesday June 4- I believe I watched the clock like a hawk that morning praying that his fever did not come back pleading that we could get home!! His Rash had now faded, His eyes White once again, His Lips now Pink but a little cracked, Feet less swollen! & the best news he was walking again oh I was so happy.
 I was crying happy tears to see my baby walking again! Kawasaki can make their joints hurt really bad (reason Carsen refused to walk hurt too much). The Dr's came in and evaluated him & could not believe the difference in him they all said he looked so much better!! They all agreed that since we made it 48 hours after IVIG & over 48 hours without a fever we could finally go home. I think I did a happy dance at this point!! We were sent home to continue his Aspirin therapy every 6 hours till his fallow up with the Cardiologist in 8 days.
So Hubby came to get us & the smile on his face when he saw his baby was priceless he was so happy to A.) see him & B.) see how much better he looked & was acting. It is really hard to see your baby so sick & in pain & there is nothing you can do to help them. It is heartbreaking!! Home we went & we were all reunited & it felt so good!!! It was amazing to be with all my boy's again!!

We had a follow up with his PA Thursday June 5- & she could not believe how good he looked & acted. I think I thanked her a million times for her persistence to have him admitted to the Hospital & her knowledge of Kawasaki & saving my son with out her it may not have clicked to me & it could have been too late. Now we are just waiting for Carsen's fallow up apt with the Cardiologist. & once I have some answers from that I will update! In the mean time I urge you to read up on Kawasaki.

Be aware of the symptoms :
Red swollen lips
Red blood shot Eyes
Fever lasting 5 days 101 or higher
Swollen lymph nodes
Swollen Hands/Feet
Strawberry Tongue
Rash

If your Child has 4 or more of these symptoms call your DR immediately!!!
Here are some sites I found helpful through all this:
http://www.kdfoundation.org/
http://kawasakidisease.us/
http://www.mayoclinic.com/health/kawasaki-disease/DS00576


                                                                  Not feeling so good
                                                                        but eating

                                                     Sleeping & mommy got a shower

                                                                 Playing on the Ipad

                                                               Having a picnic lunch on
                                                                 the blanket on Monday

                                                                   Sleeping peacefully

                                                       Before our News debut on Sunday

Feel free to ask questions if you have any! I don't mind I want to help others be aware and understand more about this disease. I am still researching & learning more myself!!
                                      -Candice-

Kawasaki Disease- A nightmare I never expected Part 1

Kawa What??? - I'm sure your thinking? Some of my friends & family have a brief understanding of Kawasaki now because my youngest child came down with this awful disease!!

First I will give you our story of what happened & then I will give you info on where to learn more & what to look for! This will probably be a 2 part blog because it has ALOT of detail & info! I am trying to make others aware & prepared because This is SERIOUS if it is not caught & the child is not treated it can cause serious issues with the child's heart! You have a 10 day window to receive treatment we caught it on day 5!


My nightmare- Saturday May 24 my youngest son Carsen who turned 1 on the 13th of May started running a low grade fever it was between 99.5 & 99.7 I attributed his low grade fever to his teething he is getting some molars I could feel them & assumed that was the cause.

Sunday May 25- Carsen started running a higher fever later in the day into the night & he was crabby & could not sleep he I assumed Ear infection at this point his fever was now 101 he was messing with his ear & only could sleep if on me I was alternating Tylenol & Motrin to make him comfortable & planned to take him to the Dr. in the morning!

Monday May 26- I called the Dr first thing in the morning only to realize they were closed because silly me I forgot it was Memorial Day! Well I knew we couldn't wait till the next day my baby was in pain & really not feeling well or sleeping, he was so tired he started to get red blood shot looking eyes. So off to Urgent Care we went.
  We were admitted fast & the Dr. looked in his ears she said they were red & said she was going to put him on amoxicillin. So off to Target we went to fill his script!
  Phew my baby will now get some relief or so I thought! Monday night was awful Carsen barely slept he was up every hour & screaming He had had 2 doses of his antibiotic now & it was not helping at all & his fever was still at 101-101.6

Tuesday May 27- Carsen has his 3rd dose of amoxicillin and still seeing no relief he all of a sudden breaks out in a rash on his legs butt & a little on his arms! I start freaking out thinking he is having an allergic reaction to the medicine my brother & mother are allergic so I assume he inherited the allergy. Immediately  I call his Dr office & they tell me to bring him straight in to see his PA.

His PA comes in and looks at his rash she says that she see's my concern but it does not look like a reaction, she then checks his ears to: Inform me they are not infected nor should he have been put on amoxicillin but unless you are used to children's ears the little redness a normal adult Dr sees can be mistaken for ear infection. She informs me to stop the amoxicillin.

She then continues to look him over he still is running his Fever, ears are not infected his Rash does not resemble that of Strep. She asks me about his Red Blood Shot Eyes. She asks me about his Very Red Lips (they look as tho he'd been drinking red Kool-Aid). Which we do not allow in our house! & then she say's I think he has Kawasaki Disease! & I shutter!! I remember a Grey's Anatomy episode to raise awareness of this disease a RARE disease a Scary disease!!!

His PA said that she was hoping he maybe had a viral form of pink eye that can produce fever & rash but she does not feel that is the cause so she requests another appointment be made with her for in 2 days because if he still has a fever that would be 5 days of a fever of 101 which is common with Kawasaki. While there she also did a white blood cell count & would take another on Thursday. So we wait & continue Tylenol & Motrin to help comfort him.

Wednesday May 28- No sleep at all I'm exhausted & he is miserable I can not set him down his feet are now swollen & he refuses to walk when he had been walking for over 2 weeks & all I can do is cry! I'm scared, I'm terrified of what is going to happen to my child & I start googling! No one knows much about Kawasaki or how a child gets it. It is looking more likely to be an auto immune disease. It is not contagious. But they just don't have enough info on this disease.

Thursday May 29- Back to the PA she draws more blood his white count is up more still Fever, Red Blood Shot Eyes, Red Lips, Rash, Swollen Feet! She is positive it is Kawasaki. She calls in another Dr & he also finds a Lymph Node that is more swollen & he as well feels Kawasaki. So then they start calling out to a hospital in Greenville NC which is 45 minutes from us. They are a Children's Hospital with a team of specialists! He is going to need to be seen by a Pediatric  Cardiologist as well!

So I text a great friend of mine & ask her if she could please watch my other 2 boy's so my husband can go to the hospital with me & she says of course (I could have kissed her) Seriously she has no idea how much I appreciated her willingness to help me. I needed my husband because I was so terrified! Home to pack a bag & say goodbye to my other babies & off we go! My husband & I's hearts in our stomach's so scared for our baby. We arrive & immediately he is weighed, measured, temperature is  taken were now rolling with 103. He is hooked up to stuff given meds and numbing cream placed on his hands for an IV!

Dr's are coming in left & right & I am having to go over & over day by day my son's symptoms  I talked to 4 different Dr's in the course of an hour. They also believe him to have Kawasaki.Then comes the IV that was so depressing watching my little baby fight so hard he was so upset because he had to be held down luckily when they stuck him with the needle he didn't seem to flinch so the numbing cream worked! Blood is drawn a pee bag placed on him to get a urine sample & I just am holding back tears looking at all this on my baby.
.
Blood work comes back with elevated counts all pointing to Kawasaki. They don't have a test yet to actually determine Kawasaki but they are working on it. But with his elevated levels & all his symptoms the Team of Dr's are all convinced he has Kawasaki the one Dr even told me should could take a picture of him & slap it into a text book next to the word because he looked exactly like pictures of kids who have also had it & all the descriptions for this disease.

Then starts the treatment how they treat Kawasaki is a round of IV meds called Intravenous immunoglobulin for short IVIG! What is IVIG you ask well... it is a blood product an immune protein. They also give a high dose of baby Aspirin every 6 hours! the baby aspirin had to be crushed & mixed with juice & given through a syringe.
  They give IVIG through the IV over a course of 8-12 hours as a slow drip every 1/2 hour though they increase the flow when we hit a certain point that night he started shaking & his fever rose. They decided to give him some Tylenol & decrease the rate of the drip. Finally they got that under control because holding my shaking baby was so scary. Poor thing just felt awful! I held him constantly unless it was time to eat or If I got him to pass out I laid him in the crib so I could use the bathroom or take a quick shower.                       
                                                                    Night One

I will end this part here and have the rest tomorrow as I said before it is a lot of info! Stay tuned & in the mean time here is the KD Foundation page you can also receive info from
http://www.kdfoundation.org/

Till Tomorrow
-Candice-