Kawa What????

Tuesday, October 16^th, started out just like any other day at our house. Rylee had her stomach scoped the week before and was out the rest of that week. She was so excited to finally be back at school. I woke  her up and told her to go potty, brush her teeth,  and wash her face. When she was finished she came in my room to get dressed.  As soon as she took her pajamas off I saw it.  Her back was covered in a rash. She was so angry with me when I told her she couldn’t go to school. I’d seen this rash before. Many times. Both on her and patients at the clinic I worked at.  She had Scarlet Fever, a rash that often accompanies strep throat.  She got it almost every time she had strep. I still got her dressed, we ate breakfast, and as soon as our doctors office opened, I called. “Can you be here in 30 minutes?” We hear this almost every time we call. As soon as our pediatrician walked in the room, he looked at Rylee and said, “This kid has strep!” The rash was now covering her arms and neck. That’s what I figured and so he swabbed her and left the room.  When he came back he looked puzzled.  The strep test was negative. Since it’s a viral test there was a chance we came too early for the test to pick it up.  He wrote her an antibiotic, something he has never done with a negative test before, and just told us, “It’s textbook in appearance for Scarlet Fever. Keep an eye on her and let me know if something comes up.” She still had no other symptoms. No fever, not lethargic, eating well, just covered in what she called “polka-dots”. We got her medicine and headed home. We had a pretty uneventful day.  (This would be the last time I would say that for weeks.) We played games, watched movies, did art projects, nothing out of the normal.  By dinner she didn’t want to eat, but was constantly asking for ice water.  I thought to myself, ‘Ok, good.  She may not be eating but at least she is staying hydrated.' She also had spiked a fever.  Maybe this is the worst and by tomorrow she will feel better. I was wrong. Tomorrow brought high fevers, a cough, and the worst rash I had ever seen.  I was puzzled. Strep is usually better in 24 hours, not worse.  I wasn’t panicking and I didn’t call the doctor back (a choice I would later regret), after all there’s a reason you take the medicine for 10 days right?! By 5:00 that evening she started throwing up, her eyes were pink in appearance but if you looked closely it too looked like a rash, lips were starting to crack from the fever, and oh, that fever…I could not get it down. It was staying in the 103’s even giving Motrin or Tylenol every 3 hours, light clothing, baths, popsicles, you name it.  Finally, when the throwing up got really bad, I asked Ryan if this could be an allergic reaction to the new medicine we were trying. She’d never had it before and only had two doses at the time so it fit the options.  We opted to play it safe and I took Rylee to an urgent care clinic.  We talked with the doctor about all the possibilities and ran another strep test, still negative.  It was a doctor that I know and he said he thought it looked like Fifth’s Disease, a viral infection that presented those same symptoms, and since Rylee’s face was so red with rash it seemed really likely.  He even went and got a dermatology book out and we sat down and looked together.  My sweet 4 year old looked just like the girl in that picture.  In fact, he even made a copy so I could show Ryan.  I agreed that this was a high possibility.  We continued the antibiotic just to be safe. Thursday and Friday were much of the same. Rylee was so sick.  By now she had horrible diarrhea, the fever still hadn’t broke, the parts of her eyes that weren’t pink were starting to look like a sickly gray color, her lips were bleeding, she was not interested in playing games or doing anything other than laying on the couch, she coughed more than she didn’t, her face was swollen, her hands and feet were swelling, and her belly hurt all the time.  She hurt so badly that she couldn't even walk to the bathroom without screaming out in pain.  We were carrying her back and forth anytime she had to go. This poor baby was sick, and getting worse by the hour.  Friday evening Ryan and I sat down and had a long talk about what to do.  Children’s ER can be the best of the best or the worst of the worst depending on the staff you get. Our last experience there had been slightly worse than horrible and I was skeptical. We had to decide if we should take her to the ER that night, or we had one other option.  We had already decided that he would stay home with her on Saturday and I would go to work. I could see who was working where, find a doctor that we know and trust and he could take her there.  While we were debating on what to do Rylee fell asleep and we both decided to let her rest and we would see how the night goes, but try to wait until morning.  This decision to wait may have been the best choice of the whole two weeks. (I’ll get to that later!) I left for work the next morning, Rylee still sleeping, feeling guilty.  Am I a bad mom for leaving her there so sick???? Ryan had been working all day the last four days and I was exhausted.  Sadly, it would be more restful for me to go to work than to stay home. (And let’s be honest, I NEEDED A BREAK!) When I got to work that day I was a little bit disappointed. The doctor that I was working with was a great doctor, but would be the first one to tell you kids aren’t his specialty.  To top things off, I couldn’t find a doctor schedule anywhere to see who all was working.  I was just about to start calling the other clinics when the second provider for the day walked in. Usually this was a PA, and I’m OK with that, but on this day God sent me just what I needed!!!! The provider was not a PA, but a resident MD who worked part time in Children’s ER!!!! Thank you Jesus.  I told her about our week and what had been going on, as soon as she heard all the symptoms and that Rylee’s fever was what it was she said, “Tell him (Ryan) to bring her up here.” I could see the light bulb above her head but she wasn’t saying anything at all about what she was thinking.  Ryan waited until the kids woke up, got everyone ready and came up to the clinic.  She took one look at Rylee and said, “Stick out your tongue.” She then looked at Ryan and me and said, “Take her to Children’s right now.  I have a friend working, I will call her and tell her to be on the lookout for you.” What??? Not only are we going to Children’s, she’s calling ahead and telling them to wait for us????  I wasn’t sure what was going on but I then made my most regretful decision.  Money was tight for us at the time and so I told Ryan I would stay at work and IF they admitted her, then I would leave.  The doctor told me several times she WILL be admitted but I just wasn't sure. Again you never know with Children's. We made arrangements for the other kids and Ryan left.  Once he left, I started digging.  I asked questions I should have asked before he left. Things like what’s wrong, why are you calling, why are you so worried? I wasn’t answered directly yet.  She was still on the phone waiting for her friend to pick up.  The next thing I was asked was “What’s Rylee’s date of birth?” When she hung up I demanded, “ You have got to tell me what is going on. Should I leave?” Earlier when I let them know if she got admitted I would be leaving she told me that Rylee would absolutely be admitted.  So then the answers started. She said, “Rylee has Kawasaki Disease. She’s very sick. Her heart is racing. She will be placed on IV medication and watched for days.” I think I was in shock because all I said was "OK". I walked back to my desk and googled . I should know better, I really should. The first thing I read was on the Mayo Clinic Site.  As I was reading I thought to myself, ‘She can’t have this. It’s too rare.’ About an hour had passed since Ryan left and I was told the phone was for me.  It was him.  They admitted her.  This can’t be.  Did he even have time to get there? I left  quickly stopped by the house and threw a bag together.  I wouldn’t return home for 6 days.   When I got to the hospital Rylee was already on IV IG. An antibody to the disease.  It’s highly dangerous. For the first 30 minutes the nurse didn’t leave our room. She was constantly charting vitals.  After that she would come in every 15 minutes and take a complete set of vitals.  Once two hours had passed we were allowed to be moved to our room where vitals would be continued every hour for the duration of the 12 hour medication.  I haven’t had a lot of time to research this medication in great detail so I don’t feel comfortable sharing my half understood view of it.  I will say that while it can be used for many reasons we were told that it is so dangerous to children because for Kawasaki it has to be given in a high dose.  This is the reason they have to do vitals so often.  My Rylee would end up having to have a second round of this medication.  Talks of a third bag were in the air when she spiked another 102 fever after two full bags.  I would love to be able to blog in great detail about our hospital stay but honestly most of it is a blur.  My little girl was very, very sick!!! As soon as we were in our room they started a daily aspirin routine of 18 baby aspirin a day.  Her little heart was working on overload and this was the only way to keep her from having a heart attack.  The nurse when we were admitted was amazing.  She stayed late to try to help us get settled because things were happening and changing so fast.  Words like aneurysm, heart attack, and heart disease kept being said and I’m positive that Ryan and I looked confused and dazed.  How can this be? Lord, please don’t let this baby have a heart attack.  She’s only FOUR! Age didn’t matter at this point, my baby was struggling and she needed me to be there and be strong.  She deserved that.  I put all my emotions aside.  This wasn’t about me.  This was about Rylee. If this sweet four year old could do this then the least I could do was hold it together.  I was there day and night.  I showered in her room, I ate in her room, I slept in her room, I wasn’t leaving.  The hardest points where when she had to take the aspirin.  4 ½ every single time.  She hated them.  She’s never fought us to take medicine but she fought this with all of her strength.  We would be sweaty after trying to get them in her.  I wanted to cry and say this is not how my baby acts, she’s not “that kid” that you see all the time.  The nurses were so kind and so patient. One of them told us that hospital aspirin tastes worse than any other medicine they give.  It’s not the little orange ones you get at home.  On day three it hit me…why are we not teaching her to just swallow them? It was this hospital stay that Rylee learned to swallow pills.  Since they are technically chewable she still got some of the taste but not as much and we always had something right there to give her. She had the first of many Echo cardiograms and we were thrilled to learn that after the second bag of IV IG there didn’t appear to be any permanent heart damage.   Rylee spent six days in the hospital.  She was exhausted after any little excursion of energy. She might play or do an art project for 30 minutes and then she would sleep for 2 hours.  We watched Mulan for the first time, and the second, and about 100 more times after that. Once we found out we were getting to leave the hospital, we were instructed to treat her like a heart attack patient would be treated, low sodium, baby aspirin every day, and then there would be three more echo cardiograms.  There would be one final echo and an EKG when we saw cardiology in December. We learned that it had caused a heart murmur, be he also said it was totally functional.  It’s monitored by our pediatrician regularly. We weren’t allowed to do any vaccines for one year and there was the risk that any infection could cause the Kawasaki to re-appear.  Of course, Rylee got the flu and that meant two more hospital trips and another cardiologist and infectious disease doctor would become involved. There were talks of re-admitting, more IV IG, and multiple meetings between doctors trying to determine the best care plan for her.  In spite of all the bad, we are blessed.  This could have hurt her heart so badly, there could have been permanent damage, she could have had a heart attack, she could have died.  I’m so thankful that we waited until I went to work and that the Lord placed a doctor that knew about KD in my path. Had we gone to the ER on Friday, she wouldn’t have met the criteria to be diagnosed.  Had we just gone in we could have had a doctor that knew nothing about it.  We’ve learned on this journey that so many moms are ignored or dismissed because of lack of knowledge on the doctors parts.  We went to the doctor 3 times in a 5 day period.  I’m thankful that we did.  At the time, you feel like you are crazy but these kids get sick.  Stand up for them! You are their biggest advocate.  Rylee had strep many times before this and I knew something was wrong.  I would have never figured it out on my own because I had never even heard of this!  I’m so thankful my little girl is safe.  This last year has been exhausting and she’s still not out of the clear.  Once she hits puberty we will have to monitor her blood pressure and possibly start medication for that, but because we are informed we will not be surprised with a heart attack out of the blue.  My Rylee fought this disease like a warrior and overcame. We are truly blessed!