Friday, April 25, 2014

Caring For Precious Hearts...

So, back to our regularly scheduled programming...Julian's KD diagnosis and the things that followed.
The cardiologists and some student doctors filled our teeny little hospital room on the day after we first stepped into Texas Children's Hospital. We waited with baited breath...No. We were so nervous to hear the results of his first echocardiogram. The results were not exactly what we wanted to hear. Julian had two out of his four tiny coronary arteries that showed dilation. That's 50% of his arteries! Booooo. 25% of children who get diagnosed with Kawasaki Disease will have coronary complications. I feel like we should play the lottery. Julian has Kawasaki Disease, which 19 out of 100,000 kids will get. And, from that 19 children, 4.75 of them will have coronary complications. Wow.
The issue with the dilated arteries is that aneurisms can form and cause blockages and whatever other dangerous things that they do. When I think of aneurisms, I think of people dying suddenly in their sleep. Apparently, that's a brain aneurism and it's usually when it ruptures that the sudden death thing happens.
Now, don't get me wrong- I am not downplaying coronary aneurisms at all. It's a scary thing to hear that your son has a coronary aneurism. If you go to Wikipedia and look up coronary artery aneurism, there is the least amount of information I've ever seen on a Wiki page.
So, yeah...Julian had one dilated coronary artery and one dilated coronary artery that had an aneurism develop in it. The treatment for that is aspirin, and a lot of it! Julian was given 465.75mg of aspirin every five hours. He also had to get a three day IV treatment of high dose steroids.
Let me tell you all about these steroids. UGH! I didn't realize that the reaction that Julian would have from the steroids would be worse than the actual KD. For one hour a day, Julian's fluids were changed from his regular hydration liquids to this high dose bag of steroids. The first day was great. It takes a few hours for the medicine to cause him to have any sort of reaction. The first issue we had was the first night's bedtime. Julian was just super whiny. It's like he was crying and he didn't know why. The second day was worse. He got his infusion in the morning and everything was fine, until the afternoon. He was just crying about everything. It was like a total hormonal woman! He wanted eggs....eggs. He just kept crying to eggs. Of course the cafeteria wasn't making eggs at the time he wanted them. Then, he wanted orange soda IN A CAN. Not a bottle, a can. Seriously. I walked the halls of Texas Children's Hospital searching for a can of orange soda. There were only bottles. He was devastated. He then accused daddy of drinking some of his orange soda. It was crazy. By the third day, we figured out how to handle the meltdowns- little to no environmental stimulation. Dark room, calm music, and trying to get him to sleep through the meltdowns. That was a very trying time for us.
Finally, after six long days at TCH, we got to go home! May 6th, 2013! YAY! During the month of May, we have many, many followup appointments at TCH with cardiologists and rhumatologists. He had a few echo cardiograms done on his heart to make sure no more aneurisms developed after his initial diagnosis. The news was always good, never worse. The dilation and aneurisms were staying the same. I am grateful for that.
Kawasaki disease is a very, very scary thing. I guess the unknown always is. This is our story. In the time since Julian has been diagnosed, I have read countless other stories from families who have children with Julian's same condition. I will continue to pray that more and more research is funded for KD. Knowledge is power. Cliche, right? Cliche, but true. :)

Thursday, May 30, 2013

He's leaving on a jet plane...for reals. :/

On the first day of this month of May, Julian was diagnosed with Kawasaki Disease. It was a surreal day for us. It was a day that changed our lives. A day that words or this blog can't even do justice for....

Tomorrow, on the last day of the month of May, Julian graduates from Pre-K. It sounds so silly to have a big ceremony to send 4 year olds into Kindergarten. I have never looked forward to a day more. I am so thankful that Julian is even here to participate in this graduation.
Julian wearing Daddy's graduation apparel earlier this month. This was five days after being released from his KD hospital stay. He looks so healthy! :)

Today, Julian had his last echocardiogram and cardiology appointment before he goes to South America for five weeks...Yes, I'm sending him. I know that we have had quite the month and most normal, sane mothers would have cancelled this trip out of pure fear after going through what we went through. Most moms wouldn't send their four year olds to South America, period. This is his culture and this is his family. Hell, this kid needs a vacation after everything he has been through! This will be his first summer to go with his grandparents, but it will not be his last. He will have the coolest stories when school starts back up..."Oh, you spent the summer at the pool? Well, I spent the summer in Colombia." Best journal entries ever. :)
 How could I even dream of taking this away from him? He has literally been packing his Spiderman suitcase full of his legos and "babies" since January. Now, all I hear from him is, "Mama, I'm going to Colombia on Sunday and you're staying here!" Um, tears much? The way I look at it is this- I may have to restrict his life in the future because of the KD and if I don't have to do it now, I don't want to.

 Julian's last trip to Colombia in May of 2011. There are four generations in this picture. :)

The results of the echo, you ask? GREAT! They said he heart is starting to look almost normal. Just the word "normal" makes me happy! There were not any new aneurisms spotted in his arteries, and the one that he did have is gone! Praise GOD! He will still have to take low dose aspirin for the next few months and we are still in the process of weaning him from the steroids, which should be finished by the second week of June. We arrive back to the states on July 4 and we have an appointment with the rheumatologist on July 5. Julian also got some blood drawn today and we should be getting a call tomorrow from the doctor about those and any other follow up we need.

I have never lived a longer month in my life. I feel like we were diagnosed with KD a year ago! And, it was only one month ago. On the other hand, I feel like this month has flown by. My baby is leaving me to go have the time of his life...What a bittersweet May we have had.

Sunday, May 26, 2013

No, you aren't watching an episode of House...

The channel didn't change. It's still our life you're watching...

As soon as the doctor at the AMAZING hospital told us that she thought that our son had Kawasaki Disease, everything seemed to start moving faster. Things were actually getting done to help us. It was a dream come true and a nightmare all at the same time.

As soon as the doctor told us what she thought, a sense of urgency filled the air. A nurse came in with another amazing person named Carrie. She was a child life specialist. From what I had gathered, her job was to make children comfortable while they were in the hospital. She did a great job. For Julian's IV, the brought in an Ipad and asked him what he wanted to watch. He was so nervous, because he knew what was about to happen. They told him that his only job was to stay completely still and not to move an inch. He could scream as loud as he wanted. How amazing were they? Even through his show request of Peppa Pig, he cried and screamed and broke my heart. But, at least he was getting treated for what he really had. That's what I kept telling myself.

Miss Carrie asked Julian if he needed anything else and he asked for a balloon. She said she didn't have any baloons and he was devistated, so she drew him one. :)

After this, he needed a chest x-ray. The x-ray was going to show inflammation, if there was any. I was never told anything about the results of the x-ray. I just guessed that there were more important things. There was a sense of urgency when they were caring for Julian that I didn't notice at the time, but now I think back and am so grateful for. Things seemed to be moving so quickly that I hadn't even had a chance yet to look up what Kawasaki Disease was.

I'm sure a lot of the readers of this blog have checked out the links I posted about KD. Kawasaki Disease is an inflammation condition, a type of vasculitis, that affects every vessel and vein in the body. When I think back to the afternoon that we took Julian to the AMAZING hospital, I remember my hand brushing against his leg and him pulling away in pain, like that simple touch hurt his skin. It did. This also explains the horrible redness in his eyes. The teeny little veins in his eyeballs were inflamed also, causing the conjunctivitis. His entire body was inflamed. How painful does that sound?
Along with the inflammation of his veins comes the possible inflammation of his coronary arteries. That was something that would be evaluated later on.
Kawasaki Disease often masks itself as other illnesses, making it difficult to diagnose. There is no blood test to confirm KD. It's purely a clinical diagnosis. If a person has X out of X number of certain traits or symptoms, they probably have Kawasaki Disease.

We were soon notified that Julian would need to be transported via ambulance to Texas Children's Hospital in downtown Houston. Everything was happening so fast that I didn't even have time to be scared or worried...yet. I actually had a calm fall over me, like a wave of relief. It was a feeling that I hadn't felt in days. 

The time had come to load up in the ambulance. Of course, Mama would be the one riding with her baby boy. Daniel is amazing when it comes to those kinds of things. He so often steps aside and let's me take charge without even a word of protest. But, then when I need him, he is right there. He knows me and he trusts me and I love him endlessly for that.

We said our goodbyes and I made a list of things that Daniel would need to bring back to the hospital downtown. He had to take his dad home, who had come with us to the AMAZING hospital. As we loaded up into the back of the ambulance, the driver told me to buckle up, hold on, and to not be nervous. Huh? How urgent was this? I realized that this was really, really bad. We had to be transported via ambulance with the lights and sirens on because of the urgency of Julian's condition. However, I wasn't scared at all when I saw Julian's excitement. He LOVED it and I'm so happy that he has any positive memories from this whole ordeal. On our quick ride to downtown, Julian's fever had dropped. It was to be expected, since he had been given Motrin before we left the hospital. 

Our super cool ambulance ride- We even passed Daddy on the highway!

I've never ridden in an ambulance to the hospital before. We got to sneak in the back door and they asked me all of the same questions that I had been answering for five days. You'd think that my answers would transfer from one hospital to the next. Didn't they know why we were brought in? It really didn't bother me one bit to answer the questions, though. Whatever it took to get Julian better. I told myself that so many times.

We were moved into a small room with space for two patients. The spaces were separated by a curtain. In the hours that we were there, two different patients were in there with us. I can't remember why the first one was there, but then they were discharged and a boy who had an asthma attack was brought in. He was about 10 years old and just wanted to sleep. His parents were freaking out and he just wanted to sleep. A few hours later, they were discharged and he got to go home and go to sleep. 

Doctor's came and talked to us while we were in this tiny room. Julian wanted me to lay with him. I didn't hesitate to squeeze my wide hips into that tiny bed with him. He was so hot and I was sweating, but it didn't even matter. The doctor's said that he was the most textbook, convincing case of KD that they had seen. Well, that's good, I guess. He needed to be started on the treatment for the disease, but the entire hospital was full and he couldn't be moved once the 10-12 hour treatment started. We arrived at about 9:00pm to TCH and we were being told that we may be able to be moved to a room by the next afternoon. Yikes. Lots of sick kids. :(

Because of the severity of Julian's case, they made the call to start the treatment while we were still in the emergency room. That meant that we had to stay in the ER until the treatment was complete. He had to be closely monitored while receiving the treatment to ensure there were no adverse or allergic reactions to the IVIG. That's a long time in an ER, people. We got moved to what they called a "semi-private" room in the ER which had his bed, another tiny bed for one of us, and two chairs. No space to walk and no windows. They kept asking if I wanted the door closed. Um, no. I would have suffocated. Plus, I liked to watch the activity in the halls. If I could make a job out of people watching/ eavesdropping, I totally would. :)

Julian getting his IVIG treatment in our "semi-private" ER room. He looks like an angel. <3

The treatment for KD is a blood product called IVIG and high doses of aspirin to thin out his blood. IVIG stands for intravenous immune globulin. It's basically a blood product made from the blood of 2000 people. So, after the treatment is given, Julian has SUPER IMMUNITIES. I'm just jealous that I can get sick and he can't right now. Because of the treatment, he isn't supposed to have any vaccinations for 12 months after his last dose. Seriously, read the link in this paragraph. It's pretty cool stuff.

Julian pretty much slept through his entire infusion of the IVIG. I think we started it at around 4:00am and he just slept like a sweet little angel. His fever broke during the treatment and it didn't come back at all. It still hasn't. Yay! :)
He had no adverse reaction to the IVIG and he just did amazing. Because of the fact that he had no reactions, they wanted to get him in for an echocardiogram sooner rather than later and they decided that they could do that before his infusion was complete. This was his first of many wheelchair rides in our five day stay at TCH. He liked it. And, we were in the elevator with some Star Wars guys! That was even neat for daddy. lol

We were in the elevator with these guys on the way to the cardiology floor! How cool is that!?

First wheelchair ride, EVER. Not the last, though! 

Julian all hooked up for them to take pictures of his heart.

He sat through the echo like a champ. Didn't even budge. He was an amazing patient. Way better than most adults. And, that's not just his proud mama talking. We heard it from lots of hospital staff! After the echo, we got to go up to our new home for the next five days! A real room just for us! And, the couch turned into a bed...It felt super fancy. Once we were in our room, Julian finished his IVIG infusion and then we waited. We did a lot of waiting for doctors. This wait was a little longer. I was waiting for doctors to tell me what, if any, damage was done to my four year old son's heart due to us being overlooked and shooed away by various doctors in the last few days. All we could do was wait and pray...

Sunday, May 19, 2013

Let's start from the very beginning...

A very good place to start.

I've told this story about 425364354 times and I'll tell it so many more times. I want to tell our story to every parent I know.

It was a Saturday morning that I'm sure many parents have experienced...Of course your child will show all signs of an impending illness on a Saturday morning. For us, it was the oh-so-dreaded strep throat. He had all the signs. "Mommy, it hurts when I swallow my spit." Low grade fever. White spots on the side of his throat. As MOM, I knew that I had it diagnosed. I just needed a doctor to confirm it and give us the antibiotics. So, off we went to a local pharmacy's clinic. After doing a rapid in-office strep test, it was confirmed that Julian had strep throat. Duh. I told her that. She didn't believe me at first because the test was very slow to come back positive. After getting out with our precious penicillin prescription, we went home for an evening of antibiotics, motrin/tylenol, and cuddles.

On Sunday, we continued our sick baby cuddle therapy and he seemed a little better. The only negative that I noticed was if he wasn't on the tylenol/motrin, his fever would shoot up. Since it was only day two of the antibiotics, I figured that they still needed a little time to work. So, we continued on with the meds.

On Monday, his fever was still going up and a few other symptoms were popping up. Daddy stayed home from school with him and sent me updates of his condition while I was at work all day. The whites of his eyes were turning red, starting at the outside corners. His fever was high. He had a light rash on his arms and legs. With these developments, I decided to make an appointment with his pediatrician.
Beginning of the red eyes (conjunctivitis) on Monday. It started in the corners like this.

At 3:55pm, we arrived at our family doctor's office. While we were waiting, Julian got sick in the trash can in the waiting room. At least he made it into the trash can, right?
On a little side note, when I told the receptionist what Julian had done and told her that I had it cleaned up and out of the trash can, she freaked out. What? Never seen a double bagged bag of vomit? They made me take it to a trash can outside. I was a little irritated.
Needless to say, Julian's little stunt had gotten us called right back to see the doctor. Score.
When nurse was doing his triage stuff, she seemed genuinely concerned. I was starting to feel like I had done the right thing by making this appointment...until the doctor walked in.

I explained that Julian was on day three of his fever while taking his antibiotics correctly. The doctor's response?

"Well, did the PA in the CVS clinic tell you that the fever could last for a few days?"
Um, no...But usually the fever gets LOWER when treated, right?

Me: "Well, his eyes started this red thing this morning...what could that be?"
Douche Doc: "You said he vomited in the waiting room? It looks like he strained his eyes doing that."
Me: "No, he JUST threw up. His eyes have been red all day."

I was getting more and more frustrated as the doctor continued his analysis of my sick child. I felt berated and like he just thought I was another over-protective, paranoid mom. Anyone who knows me, including my husband, will tell you that I don't jump at every sniffle and sneeze to make an appointment. We have waited out a three day stomach virus before without a trip to the doctor. This was different. There really was something wrong with my baby.

The doctor told me that it was just strep and to continue on with the antibiotics that were given to him.

I left that office in tears. Was I crazy, like the doctor made me feel? Maybe I was...

This was what he looked like on the car ride home from the doctor on Monday. :(

The next morning, Tuesday, Julian's condition continued to deteriorate. The whites of his eyes were getting more and more red, even zombie-like. Later, I learned that this is called conjunctivitis. His rash was getting darker and it covered almost his entire body, with the exception of his face. The fever was still present and was peaking at 103 degrees when the fever reducers wore off. We were preparing for my in-laws to fly in from South America, so my husband had been cleaning and taking care of a sick four year old all day while I worked. When I got home, we decided together that he was getting worse, not better. Time for another medical visit.

This is what the rash looked like on Tuesday. It was a little raised and he said it was itchy, but he didn't scratch it very much.

Since it was 5:00pm, we decided on an ExpressOne clinic that was attached to the local hospital. It was considered an emergency room by the hospital (ie: hospital co-pay, takes forever to see an actual doctor, doctor says five words to you and sends you home). I guess it was meant for lower critical situations and the wait was not as long as a traditional ER.
There were a few people in the waiting room, but we got called back pretty quick. While the nurse was taking Julian's vitals, he got sick in another trash can. He has the best warning and amazing aim. That's my boy.
His fever was still over 103 and now he had developed what is commonly known as "strawberry tongue". His tongue actually looked like a strawberry, seeds and all. It was weird. He looked like a sick little boy.

In the waiting room at the first ER on Tuesday night. Looks like a zombie, right?

We sat in a cold, quiet holding room while Julian slept in my lap. He was given a fever reducer while we waited for the doctor. After a while, the doctor came in and quickly came to the conclusion that Julian had developed scarlet fever from his strep throat. I felt like I had just gotten off of the Oregon Trail. Who gets scarlet fever anymore?

He ordered a strong injection of penicillin right in the tush. It was horrible. My baby was in so much pain from that shot. The nurse said that he should be feeling better almost immediately after the injection. I was hopeful, but something inside was still skeptical. I'm not even sure why, because I hadn't even given the antibiotics time to work before I doubted this doctor's diagnosis. We went home anyways and Julian was in bed by about 10:30pm. Before I turned in that night, I got online and started looking up scarlet fever. The only thing that didn't add up was the conjunctivitis. Scarlet fever did not show reddening of the eyes as one of the symptoms. A few other things did, but scarlet fever wasn't one of them. I fell asleep uneasy with the diagnosis.

Thank goodness for good friends during all of this. I was on the phone with an amazing childhood friend who had happened to marry an amazing man who was a doctor. I felt bad asking all of the questions that I had because I was sure they got "crazed mom" questions all the time. They did everything they could to help me and I could never thank them enough. So many friends on facebook, some I was close to and some that I hadn't seen since high school, were backing me up and making me feel less crazy as they read my posts. I'm proud of myself for picking these people as my friends.

At around 3:00am on Wednesday morning, Julian was awake with a fever of 103.4 degrees and was vomiting again. The antibiotics still were not working. I knew something was wrong.
I went to work and had planned on leaving early because my in-laws were arriving at the airport at about 1:30pm. I was running a tad behind and my husband called me a little irritated that I wasn't home yet. When I got home, he left to get his parents and I looked at my sick, sick boy laying on the couch. All of his symptoms were worsening. A new symptom that he had developed on Wednesday was that his lips were cracked and bleeding. He looked scary.

I started questioning the strep diagnosis in the first place. What if the office test had been a false positive? Then, I remembered that the PA had mentioned that all of the results were sent off to a lab for confirmation. I started calling any number that I could find to get those results. A super nice CVS Minute Clinic customer service representative was doing all that she could to help me. The test results were not back. She apologized with everything she had because she could hear the desperation in my voice and asked me to call back on Thursday and check again. Then I called the store that we went to on Saturday morning. There is no direct line to the actual clinic so I called the pharmacy and begged them to let me talk to the person working in the clinic. She was at lunch, but they did confirm that all lab results were in fact sent off for confirmation. I felt like I had hit a wall. I wanted to fix my baby.

When my husband returned with his parents, we decided that we needed to get another opinion. A lot of my friends suggested a different ER that had pediatric physicians on staff 24 hours a day. It was worth a shot, right? So, off we went to yet another doctor...All I was thinking was, "Please don't let another person make me feel crazy." 

This was Wednesday afternoon, right before we left for the second ER. Cracked, bleeding lips, rash on arms and lots of his body, horrible conjunctivitis. So scary.

We arrived at this ER at about 4:30pm. We walked in and I saw a lot of people waiting. Ugh.
They did some triage on Julian about 10 minutes after we arrived and he still had a high fever. Am I the only mom who kinda sorta wants her kid to have sick symptoms when going to the doctor? That sounds so bad as I re-read that, but I'm leaving it in. :)
After talking to us about symptoms and what had been going on, we got called back from the waiting room about 20 minutes after arriving. That was kind of strange for a full ER waiting room.
Going into this ER, I had a mental list of conditions and illnesses that I wanted ruled out. Among the many things that I had researched online, measles and Kawasaki Disease were a few of the things on my list. Most of these things were long shots, and I knew that. I just knew that there was something really wrong with my son. I wasn't leaving another place without a doctor telling me why my son didn't have something on my mental list.
Just walking to our holding room in this ER made me feel better. There were Eric Carle illustrations all over the walls. Everyone was so sweet and nice.
We were seen by a doctor right away. Another strange, but welcomed, characteristic of this ER.
She asked all of the questions that I had been answering all week. I hadn't even gone into my own personal list of illnesses. Hadn't mentioned one single thing that I had been researching.  Then she asked the one question that I remember better than all of the others.

Nice Doctor: "When did the fever start?"
Me: "On Saturday morning."

I will never forget the next few moments. It was like slow motion. I watched the doctor count on her fingers that number of days that Julian had a fever. Five days. Her next words would change my life.
Nice Doctor: "I think that he has Kawasaki Disease, but I need to consult with my colleagues at Texas Children's Hospital."

I cried. Not because I was sad. I cried because I wasn't a crazy, over-protective, paranoid mom.