I guess I should finish this, shouldn’t I?  Ugh. Reliving this is not fun.

So the next morning we started with an Echocardiogram.  The reason for this is creating a baseline.  Kawasaki’s Disease causes affect the coronary artiries in your heart if you don’t get treatment so we did an Echo this day and we will have a repeat one in 6 weeks to ensure that her heart wasn’t affected.  She fell asleep during the Echo and was really peaceful…luckily!

Then a couple hours later we began the IVIG.  Reagan had a high fever this entire day and even taking tylenol wasn’t really helping her fever go down much.  We had to start the IVIG because this was the only way she would get better. I think things would have gone much smoother had she not had a fever, but again, the Kawasaki’s causes high fevers and it just wouldn’t go down so we had to begin the IVIG anyway.  Immediately starting the IVIG her fever started spiking.  It was so scary and it was just going from a smallish fever to 105.4.  OMG I hate to relive this but she was snuggled into me and her body was just shaking from the fever and she was moaning this terrible cry.  Just thinking about this brings tears to my eyes.  I was crying so hard bc I knew her little body couldn’t take it and she was having such a bad reaction.  Our nurse had a bad feeling too and she went and got the head nurse.  I could not stop crying and I was so scared bc I had such a bad feeling that something terrible would happen.

A doctor came in, in addition to the head nurse, and tried to calm me down but I was crying hysterically bc my daughter was burning with fever, shaking against me and crying bc she couldn’t handle the medicine.  Then the nurse took her temp under her arm and when it said 105.4 I could see the shock and scare in her eyes and at that moment Reagan flew into a febrile seizure that lasted about 5 seconds.  It was seriously the worst 5 seconds of my life. I felt like my world was crashing down.  I felt helpless and so so so scared.  I didn’t know what to do.  Seeing her tiny body just shaking from the seizure was so scary.  Luckily she came out of it quickly and I held her and hugged her and rocked her.

We decided to stop the IVIG and let her body recover and start the medicine again later that evening.  This ended up being a very good thing because even just that 1 hour of IVIG she got was enough to bring her fever down to completely normal (which it hadn’t been for 5 days) and also her rash started lessening.

Starting the IVIG again that night when he body was doing much better was such a good thing.  She took the meds perfectly.  The IVIG goes for 12 hours and she was perfect and sleeping the entire time.  She had no reaction.  Thank god!  We were so happy and proud of her.  We were able to go home the next afternoon since she was improving so much, she was eating again, and she had no more fever.  I swear, IVIG is a miracle drug.  It’s amazing how fast the medicine worked and how it really brought our Reagan back to us.

Her tiny body went through A LOT in those 5 days. It was like she ran a marathon. She was just so exhausted and weak.  It took another 4 days resting and recovering at home for her to get back to her normal self but we were so thankful that she was feeling better and better.  Even though Kawasaki’s is such a rare disease, we are beyond thankful that there is a cure for it.  We go back for her 2nd Echo on her heart in a few weeks and the doctors think it’ll be fine since the 1st one was fine and she received treatment for the disease.

This was literally the scariest week of my life and I wish I could undo it and take it away and have none of this ever happen to my sweet girl.  It was heartbreaking to see her so sick.  But she’s back now!! Love our girl! ❤

Here are some pics from when she was in the hospital.  Her poor eyes are just so swollen.  This was when she was on the mend…I couldn’t bring myself to take photos of her the first 24 hours in the hospital because she looked sooo much worse than this and I felt bad taking pics of her in such bad shape.  She was the best patient ever and all her doctors and nurses loved her too!

http://kidshealth.org/parent/medical/heart/kawasaki.html

I went back and forth about whether or not to post about this because honestly, I wish I could forget it all, erase it, undo it.  Then I thought about how posting about it may raise awareness and possibly help someone diagnose this in the future if it were to happen to your child.

First of all, the disease is super rare, only something like 1 in 20,000 kids get it.  Only children under the age of 5 get it and it is not contagious.  The don’t even know how you get it.  They think that maybe it starts off as a virus and then something somewhere goes wrong and it develops into Kawasaki’s.  Again though, they don’t really know.  It’s hard to study something so rare.  But we are just happy that there is a cure.

It began on a Friday morning when out of no where, Reagan woke up with a fever.  It was the strangest thing.  She was perfectly fine and happy on Thursday!  She felt super crummy all day and pretty much wanted to lay with me on the couch all day and I controlled her temp with Motrin and Tylenol.  Then Saturday the fever continued and in the afternoon I noticed that she had a diaper rash that was spots around the outer edges.  This was super strange because Reagan has NEVER had a diaper rash before.  Then towards the evening Reagan was putting her fingers in her ears which led me to believe that she might have an ear infection.  I took her to my nurse friend who checked her ears and she had a very bad ear infection in her right ear.  So we started Amoxicillin that night.  Saturday night was a terrible night and Reagan was running very high fevers all night and I was having trouble controlling the temps and I was even alternating Tylenol and Motrin.  I remember being very scared that night.

Sunday morning came and I tried to give her some breakfast but she wasn’t eating much and she wasn’t even wanting her ice pop, which she usually loves, especially when she’s running a fever.  I took a nap with her on the couch from 9-10:30am (because obvi I got no sleep the night before).  When we woke up at 10:30 she was on fire, and now not only was her entire diaper area a solid color red, but she had a rash all over her entire body and her eyes were completely bloodshot.  The whites of them were solid red.  So freaking scary.  I took her straight to the doctor at this point. Her temp at the doctors office was 105.4!!! The NP thought the rash was from the amoxicillin.  Even though she’d taken Amox before and was fine, she thought that was what it was.  She thought the bright red eyes were from the high fever.  We gave her Motrin in the office, wet her hair and waited for the fever to come down.  Which it did.  After about 45 min her temp was down to about 101 and she perked up so we left with a new prescription for her ear infection.  (Her right ear was still infected).

Sunday afternoon and night were absolutely horrendous.  I could NOT keep her fever down.  I gave her 2 tepid baths because she was literally on fire.  I’m telling her her skin was so dang hot.  Even when I got her temp down a bit in the bath she still never perked up, all she did was cry.  Then that night I sat with her on the couch with cold, wet washcloths all over her.  The wet washcloths were getting warm from her hot skin.  It was a nightmare.  I called the doctors cell phone twice and asked him at what point do I need to take her to the hospital…because once again the tylenol and Motrin weren’t really working.  I’m not usually that crazy mom blowing up the pediatricians cell phone after hours so you know I had a bad feeling. That night was the same deal, she slept in the bed with me (Drew went to the guest room) and I was up all night monitoring her and alternating meds.

Monday morning was the same deal.  She woke up at 8:45am and never perked up.  By noon she had done nothing but lay on the couch half sleeping.  She was listless, couldn’t hold her head up, couldn’t sit up, wouldn’t eat anything, and at this point wouldn’t even drink.  She would try to drink but then would pull the straw away as if it hurt her.  I started squirting a syringe of water in her mouth bc I was so scared she was getting dehydrated.  She cried and didn’t want the water but I forced her to get some water in her.  She would also touch her mouth and then wince in pain.  I was crying at this point and so scared.  I took her back to the doctor.  This time we saw the real physician and he took one step in our room, looked at Reagan from across the room and said, “She has Kawasaki’s”.  It was so obvious that he didn’t even need to examine her.  All the symptoms came together now.

I proceeded to crumble as he told us we were headed to the hospital.  We went straight there.  Luckily Drew had stayed home from work this day since he was so worried about her.  We checked into the ER and we were pulled straight back to see the Doctor.  Her illness was pretty severe, we didn’t even have to sit there and wait at all.  We went back to the examination room and Reagan fell asleep in my arms.  They came to draw her blood and put her IV in.  This is one of the scariest parts- when they put her IV in she didn’t even open her eyes.  That’s how sick she was, she just kept sleeping. She was so out of it.  So horrible. There is not a specific Kawasaki’s disease test, they just go by the symptoms and there are 2 blood markers to look for.  They tested her blood and the 2 blood markers were off the charts.

Between the blood test, blood shot eyes, rash all over, high fever, red and swollen lips and tongue, and with this lasting for 4 days, they knew this is what she had.  The only symptom that she didn’t have, is 1 lymph node should be more swollen that the others.  But she had everything else.

We were admitted immediately and sent straight upstairs to a room.  Of course, Nana and Papa came immediately.  It was evening by this point and they weren’t going to begin treatment until the doctors examined her the next day, and also she had to have all these symptoms the next day because that is what separates Kawasaki’s from other illnesses, is that it lasts for 5 days (and more).

So we spent the night and monitored her and treated her symptoms and tried to keep her as comfortable as possible.  Luckily she had the IV now for fluids since she wasn’t eating at all at this point and drinking was too painful.  It was so heartbreaking, she would try to drink bc she was thirsty, but she would cry and pull the straw away from her mouth because it hurt so much.  Also, she had quit using her Wub at this point bc even sucking on that was painful for her.  That night I would put some vaseline on her lips to give them some relief and they had some kind of numbing mouthwash that I would swab in her mouth that seemed to help her a little.

One of my good friends from high school works on our floor in the hospital so it was very comforting to have her there with us.

Well I think it’s safe to say that Momma Girl had a pretty awesome Christmas! She was such a good girl all year and Santa was so good to her! We just love her so much! We had such a fun week with my family down in LaGrange and Reagan got to see all my friends who were home for the holiday!  She was a perfect angel!

Reagan is so ready for Christmas!  We took her to the botanical gardens to see all the lights and it was so fun! I think she enjoyed it!  It’s funny since this time last year she was just a teeny tiny little thing! Now she’s taken over everything and her toys are everywhere! She is such a mess! She loves to throw things everywhere and make messes wherever she goes. Her favorite thing is a clean pile of something bc then she can throw it all about 🙂  We love our angel face with all our hearts! Muah!!

Momma girl is the cutest ever! I love her pony tail like Bam Bam! I tell you one thing…she LOVES to play outside! It is her favorite thing. She loves exploring and going up and down little steps.  She’s so cute! Poor thing always puts up a fuss when it’s time to go back inside.  Something new she’s learned- she can sign “more” in sign language! So cutie!!

 I take way too many pictures every day! I can’t help it…I have the cutest little subject! I love her so much! She LOVES to play outside! It’s her favorite and she always cries when we go back in, haha.  She went down that pink slide all by herself! I couldn’t believe it, she’s gonna be a daredevil like her momma!  She loves the thrill:) She is my happiest joy on earth!

I take way too many pictures

 Well, my poor Momma girl had to go see Santa again and she was not happy about it! I was NOT trying to torture her, I promise.  My parents really wanted to see her see Santa and I had already reserved our spot for this Santa so we just had to try.  Oh well! Don’t worry, she forgot about it 10 seconds later and had a yummy lunch next door!  I just LOVE this picture of Reagan with her Nana and Papa…haha this was right before she saw Santa!

What a cutie little angel bug. She was a reindeer and she fell asleep in Santa’s sleigh.  I love her so much!

What an amazing Thanksgiving!  We had such a fun time and loved spending it with Reagan.  Last Thanksgiving she was only a month old so things were much different this time!  She loved the Thanksgiving food!  Reagan got to eat at Charlie Joseph’s for the very first time and she loved it! CJ’s is a Lagrange landmark! Such a cutie with her name in ketchup!  We love our princess so much!

Reagan loves wearing the knitted hat that our friend Andrea made her and my mom knitted Rea the sweater in that pic 🙂

Well we are definitely getting ready for the holidays over here! Reagan is such a cutie!  Needless to say, she was not a fan of Santa today!  Today was round 1.  We have an appointment with the Phipps Santa in a couple weeks but I’m pretty sure it is going to go just the same way! She does not like strangers touching her!

I think Rea is saying Dada now!  Yesterday Drew got out of the car to pump gas and Reagan could see him from her car seat and she said, Dada.  She still babbles it so we still question if she really knows the meaning of the word but I really do think she’s getting it!  I love hearing her sweet little voice babbling sounds! She is such an angel face!

 

Momma girl is such a cutie! I love the pic of her reading her books in the middle of all her toys! Cutie! She is such a little fashionista! Getting ready for turkey day! She was so funny when I put her in the swing! She actually was really happy and chilling there! I love my sweet momma girl 🙂