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-
Thursday, June 13, 2013
Tuesday, June 11, 2013
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:
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-
Monday, June 10, 2013
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.
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-
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 :
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
the blanket on Monday
-Candice-
Sunday, June 9, 2013
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-
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-
Thursday, May 23, 2013
Ah Motherhood
Well had you been in my house last night you surely would have heard me singing in my opera voice!!!
Motherhood is awesome it really is, there are day's I want to run to a deserted island & never return but at the end of the day I wouldn't change my choice to become a mom!! The kisses & hugs & funny things the kids do all make it worth it!
But.. there is a lot of crap that comes with being a mom & by crap some days I literally mean crap!
Event 1: As I as I'm playing with the kids my oldest runs off to the bathroom normal he's 5.
So I'm playing with the little two & all of a sudden Aiden is screaming running into the room freaking I'm like what what & he's yelling I over flowed the toilet!
Ah CRAP! & that's just what it was! So I am hard core plunging the toilet and here come the other 2 I'm trying to gently nudge them back because who the heck wants their kid playing in poop! Get that crisis averted & back to playing or so I think...
Event 2: My 2 1/2 yr old comes yelling mommy I peed I peed! Well I was just plunging the toilet & my bathroom is closed due to Tuesday's toilet adventure so this can only mean one thing...
Oh boy yep pee all over the floor & on a puzzle of a tree. Well I suppose the fact that there was a tree he figured it was ok since he likes to pee on trees outside!
Brycen has actually been fully day time potty trained since 20 months. He did it all on his own he showed the interest & we kept up with it, but every once in a great while we have an accident it happens!
I do give him an A for effort for peeing on a tree just wish it was outside not a puzzle on the inside!
So off to get my cleaning mixture I soak the spot up then sprinkle baking soda over it & then use a spray bottle of vinegar/ water & 2 essential oils lemon grass & tea tree & it takes care of the smell!!
Essential oils are pretty darn amazing they are like my New Best Friends!! So don't worry you will hear more about them :)
So back to playing when...
Event 3: The bloody nose! UGH! Now I say ugh because if my son would learn to leave his finger out of his nose we wouldn't have the bloody nose problem!! & the boy is a bleeder he takes after me poor kid! Seriously all over my bed he's covered so off to the recliner he goes with a wad of paper towels!
Of course my husband is at softball during all this! Lucky jerk! No seriously though, sometimes I think he thinks I make this crap up because it always happens when it's just me!
Oh the joy's of Motherhood!! It is never dull NEVER!! When the day is done & I kiss them goodnight & we exchange the I love yous it makes me smile & chuckle & think you may deal with some crap but it's TOTALLY worth it!!
-Candice-
Motherhood is awesome it really is, there are day's I want to run to a deserted island & never return but at the end of the day I wouldn't change my choice to become a mom!! The kisses & hugs & funny things the kids do all make it worth it!
But.. there is a lot of crap that comes with being a mom & by crap some days I literally mean crap!
Event 1: As I as I'm playing with the kids my oldest runs off to the bathroom normal he's 5.
So I'm playing with the little two & all of a sudden Aiden is screaming running into the room freaking I'm like what what & he's yelling I over flowed the toilet!
Ah CRAP! & that's just what it was! So I am hard core plunging the toilet and here come the other 2 I'm trying to gently nudge them back because who the heck wants their kid playing in poop! Get that crisis averted & back to playing or so I think...
Event 2: My 2 1/2 yr old comes yelling mommy I peed I peed! Well I was just plunging the toilet & my bathroom is closed due to Tuesday's toilet adventure so this can only mean one thing...
Oh boy yep pee all over the floor & on a puzzle of a tree. Well I suppose the fact that there was a tree he figured it was ok since he likes to pee on trees outside!
Brycen has actually been fully day time potty trained since 20 months. He did it all on his own he showed the interest & we kept up with it, but every once in a great while we have an accident it happens!
I do give him an A for effort for peeing on a tree just wish it was outside not a puzzle on the inside!
So off to get my cleaning mixture I soak the spot up then sprinkle baking soda over it & then use a spray bottle of vinegar/ water & 2 essential oils lemon grass & tea tree & it takes care of the smell!!
Essential oils are pretty darn amazing they are like my New Best Friends!! So don't worry you will hear more about them :)
So back to playing when...
Event 3: The bloody nose! UGH! Now I say ugh because if my son would learn to leave his finger out of his nose we wouldn't have the bloody nose problem!! & the boy is a bleeder he takes after me poor kid! Seriously all over my bed he's covered so off to the recliner he goes with a wad of paper towels!
Of course my husband is at softball during all this! Lucky jerk! No seriously though, sometimes I think he thinks I make this crap up because it always happens when it's just me!
Oh the joy's of Motherhood!! It is never dull NEVER!! When the day is done & I kiss them goodnight & we exchange the I love yous it makes me smile & chuckle & think you may deal with some crap but it's TOTALLY worth it!!
-Candice-
Wednesday, May 22, 2013
Strawberry Bread
As promised from yesterday here is the Strawberry Bread:
So I played around on pinterest looking for a recipe & I found a few & then decided to do what I wanted.
I do that a lot! So here is how I made my bread:
3- cups flour
1-cup sugar
3- Eggs beaten
1 Tbsp- Cinnamon
1 tsp- Salt
1 Tsp- Baking soda
1 1/4 cup apple sauce
*Fresh strawberries (you could use frozen & thaw) But I think fresh is better :)
Not really sure how many I used because we had went Strawberry picking I'd say probably about a pack & 1/2 from the store & slice them
Mix all dry ingredients & then add apple sauce & eggs & then fold in strawberries
*You could add nuts or chocolate chips
I have friends with allergies so I wanted to be careful with what I put in mine.
Bake at 350 for 40 minutes to 1 hr you want a toothpick to come out clean.
I used 3 smaller loaf pans you could do 2 9in pans make sure you butter them or at least spray with Pam
This was super yummy & a big hit!! It is very moist!! My kids ate it again this morning for breakfast!
Winning!!!!
Enjoy
-Candice-
Tuesday, May 21, 2013
Sitcom City
I've said it before I need my own show!! Seriously I can't make up the stories of my life if I tried!! It's like a sitcom here and almost on a daily basis!!
I know it's been quite awhile since I've blogged & life has been anything but dull to say the least!! If I can recall some of the other craziness that has gone on around here I will share but right now I feel like I'm living in a blur!
Today I have a funny story well a couple actually!! Today started an easy chill morning I had a few of my closest girl friends over for some coffee & muffins & strawberry bread (it's delicious & I will share the recipe soon). Anyhow we had a lot of laughs the boys actually napped while the girls were here they were up early this am so then they crashed.
Well after they woke up & entertained everyone with their cuteness, it was time to say goodbye the girls left & my real life began... the life behind closed doors that not everyone sees! See.. everyone always says my kids are so cute & so well behaved boy do they have people fooled!!!
As I'm cleaning up from the get together I realize Brycen & Carsen (who is 1 now & walking & into everything ) have disappeared this is never a good thing!!! Where could they be you ask?? Whelp momma forgot to shut her bathroom door & in the bathroom were 2 toilet monsters! Yep folks splish splashing in the potty water SWEET!!! As I run in yelling Noooo I slip on all the water they splashed out do a split (haven't done one since eh.. Senior yr in high school about 11 yrs ago) & smash my knee it was awesome NOT! The boy's were laughing funny funny mommy fell!!
So get that mess cleaned up & lunch done & all that fun well now its time for Carsen's second nap so down he goes & what did mommy forget to do again yep close the bathroom door Dammit!
There sits Brycen covered in toothpaste & toilet paper! Why??? "look mommy lotion" -Um no son that's not lotion & you now smell like a peppermint candy & your sticky time to rinse your booty off!!!
So we get that taken care of. Play some super hero's, have a visit from the Bug man because mommy does not do Bugs it's about summer time & the creepy crawlers are coming out! He told me I had a village of children made me laugh!! Probably because they were coming out of every room one at a time.
Scary I'm sure!! sometimes they scare me I feel taken over some days! Makes me kind of wish I was an octopus with 8 arms (imagine the things you could get done).
Well then its time to prep dinner & then play some more & then the dramatics set in Brycen decides to shove a ball in a toy that it does not belong in & guess what?? It's stuck & he is freaking! Daddy has a job when he gets home ;) Then Carsen decides Brycen's juice cup looks good & he's thirsty so why not take a drink & oh man it's on don't mess with the boy's juice.
Seriously..............
At this point I found myself singing in an Opera voice! Yep sometimes when things get too crazy I sing high pitched maybe to block out the whining? Maybe because in some weird way it distresses' me? I dunno but it helps! So ya I do that & they all look at me like your crazy & hurting my ears hahah I suppose the day glass shatters that method will be over with but for now it works :)
What do you do when things get too crazy? Do you run? Hide? Sing?
-Candice-
I know it's been quite awhile since I've blogged & life has been anything but dull to say the least!! If I can recall some of the other craziness that has gone on around here I will share but right now I feel like I'm living in a blur!
Today I have a funny story well a couple actually!! Today started an easy chill morning I had a few of my closest girl friends over for some coffee & muffins & strawberry bread (it's delicious & I will share the recipe soon). Anyhow we had a lot of laughs the boys actually napped while the girls were here they were up early this am so then they crashed.
Well after they woke up & entertained everyone with their cuteness, it was time to say goodbye the girls left & my real life began... the life behind closed doors that not everyone sees! See.. everyone always says my kids are so cute & so well behaved boy do they have people fooled!!!
As I'm cleaning up from the get together I realize Brycen & Carsen (who is 1 now & walking & into everything ) have disappeared this is never a good thing!!! Where could they be you ask?? Whelp momma forgot to shut her bathroom door & in the bathroom were 2 toilet monsters! Yep folks splish splashing in the potty water SWEET!!! As I run in yelling Noooo I slip on all the water they splashed out do a split (haven't done one since eh.. Senior yr in high school about 11 yrs ago) & smash my knee it was awesome NOT! The boy's were laughing funny funny mommy fell!!
So get that mess cleaned up & lunch done & all that fun well now its time for Carsen's second nap so down he goes & what did mommy forget to do again yep close the bathroom door Dammit!
There sits Brycen covered in toothpaste & toilet paper! Why??? "look mommy lotion" -Um no son that's not lotion & you now smell like a peppermint candy & your sticky time to rinse your booty off!!!
So we get that taken care of. Play some super hero's, have a visit from the Bug man because mommy does not do Bugs it's about summer time & the creepy crawlers are coming out! He told me I had a village of children made me laugh!! Probably because they were coming out of every room one at a time.
Scary I'm sure!! sometimes they scare me I feel taken over some days! Makes me kind of wish I was an octopus with 8 arms (imagine the things you could get done).
Well then its time to prep dinner & then play some more & then the dramatics set in Brycen decides to shove a ball in a toy that it does not belong in & guess what?? It's stuck & he is freaking! Daddy has a job when he gets home ;) Then Carsen decides Brycen's juice cup looks good & he's thirsty so why not take a drink & oh man it's on don't mess with the boy's juice.
Seriously..............
At this point I found myself singing in an Opera voice! Yep sometimes when things get too crazy I sing high pitched maybe to block out the whining? Maybe because in some weird way it distresses' me? I dunno but it helps! So ya I do that & they all look at me like your crazy & hurting my ears hahah I suppose the day glass shatters that method will be over with but for now it works :)
What do you do when things get too crazy? Do you run? Hide? Sing?
-Candice-
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Our first 5k together 
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Kawasaki Disease |