Kawasaki Disease

Friday, January 1, 2016

As I lay on this hospital bed with my sweet love sleeping in her "nest" next to me, I figured I'd go ahead and start getting all of this down. (I just realized I started her Birth Story almost the exact same way... Ironic.)

The morning of Monday, December 7, Aiden woke up with her first fever. Conveniently, my first day back from Maternity Leave was supposed to be the next day. I thought it was just a cruel twist of the knife for my last day of maternity leave, but the fever persisted. We took her to the doctor that Tuesday, and were told it was just a virus. At that point, she was only on day two of her fever and didn't really have any other symptoms. Maybe a runny nose, but mild at its worst. We went about our week, and she was still fighting the fever and developed a rash all over her body. On Friday, she seemed to be coming out of it - she was in a great mood and her fever never went above 99. Saturday morning she was back to her pitiful self (and we also took family pictures - poor bug!), and we decided if she still felt like that on Sunday then we'd take her to the doctor Monday.

Monday, December 14 we were back at the doctor with a temperature of 101.1. Still no other real symptoms other than having a fever and being cranky (the rash was gone by then), so Dr. Stokes decided to do a bunch of tests. Flu, strep, RSV, UTI (they used a catheter to get the urine - ouchies), and even a chest x-ray to check for pneumonia. Everything came back negative, but they decided to give her two shots of a broad spectrum antibiotic, Rocephin, to bring the fever down while we waited on further tests to come back.  They did the catheter and shots at the same time, and this mama could barely handle it (little did I know what was ahead!). Of course, she started breaking out in a rash from the Rocephin, so they had to give her Benadryl. We made a follow up appointment for Wednesday...

Wednesday, December 16 we learned all of the tests had come back negative. Her white blood cell count was high, which means they knew her body was trying to fight something - they just couldn't figure out what. Dr. Strauss sent us to Urgent Care to get more blood work done, and then he called us that evening and wanted us to come in for another round of Rocephin shots. Her CRP level came back elevated (it was at 11... normal is about 1). We headed up to the doctor, but because she wasn't showing any signs of a bacterial infection we decided against the shots. They decided to swab her for another respiratory panel (first one came back negative) and took one of her dirty diapers for a GI test. We made a follow up appointment for Friday...

Friday, December 18 we headed back to the doctor. Still running a fever, still no answers. Dr. Strauss recommended we head to the hospital since there's nothing else they could do for us at the doctor's office. We headed home to consolidate to one car and then straight to Children's Healthcare of Atlanta - Scottish Rite. I let myself cry on the drive from the pediatrician to our house, but asked God to give me no more tears during this process. He has answered! I've shed a couple single tears here and there, but have overall been able to hold it together this whole time.

We arrived at the ER at 10:41am (I don't know why I remember the time, but I do). I was impressed with how quickly we got checked in and into a Triage room. After the initial consultation, we were put in a room - although still in the ER. Even though Dr. Strauss called ahead and sent over all of our info, the hospital wanted to run the same tests over again. Dr. Zeigler in the ER was fabulous, and a great indication of the care we would receive during our stay. In addition to more blood work, our sweet girl had to have an IV put in - which was the worst scream I've ever heard in my life and so painful to watch. She also got another chest x-ray and an ultrasound of her abdomen. The doctor said he could feel her spleen when he was feeling around (comforting), but the ultrasound came back clear! Apparently infections can cause your organs to swell... crazy. 

And as if that wasn't enough, Dr. Zeigler recommended she have a spinal tap. We were very hesitant (you hear all those horror stories), but he was so wonderful about sitting down and really talking us through it. It's very, very rare that anything negative comes from a spinal tap - and he personally hasn't had anything bad happen during one he or any of his colleagues have done. He also wanted to rule out Meningitis. He didn't think she had it, but said it's one of those scary diseases you want to check for rather than look back and regret it. We agreed, and he even let us go back in the room while they did it. I stayed in Aiden's face to keep her paci in, while a nurse held her down and Adam watched. I could hear Adam losing it behind me, but God kept answering my prayer and I held it together. I was also so close to Aiden that I couldn't see the procedure, which also helped. In one of the more comforting moments of my life, I was humming "Jesus Loves Me" to Aiden and Dr. Zeigler started humming along with me. The people at this hospital are truly amazing. Right away he said her fluid looked very clear and was encouraged that it would come back negative - which it did! Soon after we were officially admitted to the hospital and sent to a room for the night.

Our room was pretty depressing and very small, and it turns out we were on the Observation Floor for pre- and post-op. Needless to say, the floor was pretty empty Friday afternoon and when we got up on Saturday we were the only ones there! It was kind of creepy. Luckily, we were moved to a real room around noon on Saturday, after Aiden received an echocardiogram. As soon as we got into our room (Club 419, represent!), we were introduced to the best nurse - Kelsey. We love her!

Shortly after, Dr. Andreson came down and said she consulted with the cardiologist and they believed Aiden had Kawasaki Disease. Of course, hearing a diagnosis was scary at first, but she explained that it was treatable which was a huge relief. The treatment is a 12 hour IV of Immuno Globulin and aspirin. We got started on the IV around 5:30 on Saturday evening - the first two hours, they had to come in and check her vitals every 15 minutes, followed by another two hours of 30 minute checks and then hourly checks for the remainder of the time. Needless to say, we didn't get much sleep that night.

She woke up Sunday smiley as can be! Then she spiked a fever around 6pm, which was a bummer, but we were told not uncommon. We just had to make it to 6am on Tuesday with no fever to be released that day. She had an awesome day on Monday - very smiley again - and once we made it past 6pm Adam and I celebrated that we made it past the "hump" and only had 12 hours to go! (Turns out the Infectious Disease team did the same thing.) At 7:30pm I could tell she started feeling warm and was trying not to freak out. I decided to check her temperature myself (since I'd seen the nurses do it so many times), and Adam and I stared at the reader praying for less than 38 Celsius (100.4 Fahrenheit... that's what they consider a fever). Our hearts sank when it read 38.4. I called a nurse in and said she felt warm (but didn't admit I had taken it upon myself to take her temp). They came in about 5 minutes later and we hoped that I had just done it wrong.... then we saw 38.8 pop up on the screen. 101.8. We were going to have to start all over again with a 12 hour IV followed by a 48 hour observation period.

Since we knew we were going to be in the hospital for another few days, I headed home to start some laundry and grab more clothes shortly after they confirmed she had a fever on Monday night. Of course, I raced there and back - and I can't say I'm sad I missed them putting in another IV. This time, they put it in her left hand, so they had to tape her arm to a board to keep it straight. She kept hitting herself in the face, so we put a diaper over it - making her look like a boxer. Kind of hilarious, except that she was so frustrated she couldn't play with her hands. 

I had a hunch that she was going to need two treatments of the IVIG, and I was right! During the second treatment Monday night/Tuesday morning, she only ran a slight fever (38.1) around 3am and that was the last fever we've seen. (It's now been a whole week without a fever!)

We just had to make it to 10:30am on Christmas Eve without a fever and we were heading home! Our doctors came in around 9:00am (too excited to wait), and we were officially discharged right around 10:30! It felt SO good to finally be going home!!! And on Christmas Eve!

Through all of this, we could not have been more thrilled with our pediatrician and everyone at CHOA. I cannot say enough good things about our nurses, doctors, cardiologists, infectious disease doctors, techs... everyone was so amazing. I especially loved how we never felt rushed during their check-ins. They were very thorough about everything, answered all of our questions in great detail and we could tell they were genuinely concerned about Aiden. They also didn't just stop by every once in awhile. We saw every doctor at least once a day, usually more. 

We also would not have been able to keep our sanity without our family always coming up to keep us company (we also had a few friends stop by!). Truly, we are so very blessed with the amazing, supportive people in our lives. It makes my heart melt to see how much they love Aiden. 

And of course, all thanks go to God for ensuring our baby girl came out of all this unscathed and for keeping us strong during the process. We are so excited to see the big plans He has for her.

The first morning of her fever… silly me thought it would be gone by the next day.

She was so pitiful, but extra snuggly. Me loving all those snuggles quickly wore off when I realized she was still miserable after all that time.

Waiting at the ER

That little hospital gown about ripped my heart into a million pieces, but it didn't seem to bother her a bit! When I saw smiles like this I'd tell myself "Maybe she's faking this whole thing and she's fine!" Then I'd remember she's an infant who can't really fake that.

She looks so little. :(

Rocking this fashionable backless option.

Hooked up to the IVIG, Round 1.

Such was such a trooper! She went through a lot for such a little babe, and truly blew us away.

Hallelujuah! Round 1 (and what we hoped would be the only round) is done!

Such a smiley babe after the treatment!

Night and day difference!

Getting an EKG. "Hey lady, what do you think you're doing?"

Her Cindy Lou Who door.... Children's goes above and beyond to make the details meaningful.

Loves her daddy.

She could not be more beautiful.

When she spiked a fever and had to get another round of IVIG, her original IV had clotted up so they had to do another one. We were so nervous about this, because she screamed in so much pain the first time. She was a champ with the second one! 

Getting ready for Round 2 with her great nurses!

Snooooozing! Note how we had to put a diaper over her IV. She was about to give herself a black eye, so we had to turn her into Rocky. It was kind of hilarious, until it wasn't. She couldn't sleep the last couple nights in the hospital and we could tell it's because she was in pain from that dang IV. The second they took it out she was much better.

On Tuesday, we got the green light to put on real clothes! And it's a good thing, I had lots of Christmas outfits to get through. :)

Exploring the hospital. This is The Zone - an awesome area for kids to play. They had a Microsoft Room with computers, XBoxes, etc.; a movie theatre; a kitchen where they were decorating cookies; a play area where they were passing out Christmas gifts; and more.

Clowns walked the halls all the time - CHOA is truly the best!

They have a library with so many movies and books to check out. We kept Christmas spirits high by reading lots of books!

Each floor was a different Christmas theme - ours was "A Merry Fishmas".

The Bakers brought Maggiano's for a nice family dinner on Wednesday night, and Aiden was in a great mood! Smiling and giggling all night.

Thursday morning we got the green light to take out the IV - yay!

Shortly after we were officially DISCHARGED! 

Our tech that morning suggested we go downstairs and get a farewell picture in front of the beautiful Christmas tree. I tell ya, everyone at CHOA is just amazing.

As I said before, we could not have made it through this without the love and support of our family and friends. Shortly after we got home, we received two surprises at our front door!

For being in a hospital for a week, we had an amazing experience. (Of course, we hope to never be back!) We know our outcome would not have been as positive without all of the prayers we received. Our God is good, ALL THE TIME!

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