Kawasaki Disease: Part 21

The weird thing about Kawasaki Disease is that progress happens in cycles... three baby steps forward and one giant step back. Sometimes, this makes it seem like there is no progress. However, this process "is concerning, but not unexpected."

One of the most concerning aspects was the bouts that Liam would have throwing up and running a low grade fever. The fevers were typically lower than 100.9 degrees, but they were still fevers that we had to watch for. Then, almost like clockwork, Liam would start throwing up.

Panicky, I would call Seattle Children's Hospital at the same time that Shaun would be calling Dr. Crawford. Then, we would walk through the standard series of questions: when did it start, what was his heart rate like, when was the last time that he took his Aspirin, what is his temperature? Next, we would be told to see if it lasted for two hours or more. If it lasted for two hours, we had to immediately take him to the hospital.

Interestingly, Liam would often throw up right up to the two hour mark and then magically stop. It was a blessing, yet nerve wracking. Watching the clock tick while comforting Liam was a weird sort of time continuum. The clock never seemed to move, yet two hours would pass in a blink.

On one occasion, on March 16th at 6:53pm, I sent out an urgent prayer request to our prayer warriors. It was wonderful to have a team of people praying for our little man as the minutes dragged by. By asking for prayers and praying ourselves, it felt like we were helping to do all we could for our little man.

It was also wonderful to celebrate with others when Liam stopped throwing up! On March 16th at 9:40pm, I was able to send out the following update:

"Thank you for praying! Liam has not thrown up in an hour! Yay! So, unless, he throws up again during the night, I think we will get to stay home tonight!"

The amount of positive response to that joyful news was overwhelming. It was awesome to have so many people rooting for little Liam's health.

The next morning, on March 17th, I was also able to send out a joyful update:

"The night was good for Liam. He slept the whole night. This is the third time he has spiked a low grade fever and started throwing up. The doctors are not sure why Liam is having these set backs, but they do not seem overly concerned. I would like prayers for no more of these episodes! Thank you for praying."

Another occasion that comes to mind that made our family feel really blessed by the power of prayer was when our church took the time in the middle of Sunday church service to pray for Liam and our little family. We felt so blessed! We can endure so much more when we are surrounded by those walking with us in the midst of our uncertainty and slow moving progress!

Kawasaki Disease: Part 20

Shaun and I decided to make our trips to Children's Hospital also a time of family fun! This also seemed to work well with Seattle Children's schedule. We needed to stay somewhat close while Liam's blood work was being completed so that we could return quickly and have Liam receive a blood transfusion if needed.

Our first stop was to iHop for lunch! Liam LOVES pancakes and we thought that he would LOVE to eat some of his favorite food after going through a morning of running tests. Sadly, this was a "parenting fail." Liam was exhausted and did not want to be told to sit still in a booth after spending several hours being told to sit still in the doctor's office.

The next stop was a much bigger success. We took Liam to the Woodland Park Zoo! Even though Liam was still in reverse isolation, we figured that we could keep him pretty well contained in a stroller. As you can see... he was VERY excited to be breaking the rules with us and going to the zoo!

Now we are in Shaun's favorite part of the zoo! The aviary! Birds, Birds, and more Birds! 

Check out the Zebra! 

AND the elephant!

Overall, the zoo was a great choice and we all had a good time! However, we could tell that Liam was definitely still sick. He did not mind just being pushed around in the stroller being snuggled into his blankets. We had barely loaded back into the car when he fell asleep. Our little guy had experienced a very full day!

Also, during the time that we were strolling around Seattle, we received a call from Children's tell us that Liam's numbers were much improved and that we would not need to come back for a blood transfusion! Praise God! Instead, we were told to try to pump him full of iron! Challenge accepted!

Kawasaki Disease: Part 19

When we arrived at Seattle Children's Hospital, we learned that everyone was required to check in with security and get "day passes." These passes had our pictures on them and were similar to the passes that we had to wear while Liam was admitted in to the hospital.

Then, we made our way to the "Nemo!" section of the clinic. Seattle Children's Hospital has distinct floors that are differentiated by themes and purpose. Our floor was called "Ocean" and it included the Cardiac Clinic. It also was covered with "Nemo!" (or clown fish). Liam was SO excited that there were real Nemo fish, Nemo coloring pages, and Nemo decorations! Seattle Children's Hospital does an excellent job creating an environment that feels fun for kids!

When it was our turn, we were taken into a small exam room with a large TV. Liam was asked to pick any movie that he wanted to watch during his echocardiogram. He chose Mickey Mouse of course! The movie turned out to be the perfect length: 1 hour. The echocardiogram wrapped up around the same time that the movie credits began to role.

During the echocardiogram, Liam did an excellent job of remaining perfectly still. It was another sign of God's goodness and an answer to a prayer! The more that Liam stayed still, the better that we would be able to get good pictures and videos of his heart. While in this room, I positioned myself so that I could see the videos and pictures that the tech was taking of Liam's heart. One thing that I immediately noticed was that the blood seemed to be moving back and forth between ventricles instead of pumping through. This made me worried. I also noticed that there seemed to be an extra heart beat between the blood pumping. I unfortunately had enough medical knowledge to know that something was wrong, but not enough knowledge to understand how wrong. Ugh.

After the echocardiogram was completed, we were ushered into an exam room where we would meet Dr. Portman for the first time. While we were waiting, we met a Medical Assistant who tried to take Liam's blood pressure and complete and EKG. Liam was less than helpful... however, it was not as important that these numbers were accurate because the echocardiogram was the real test.

Here is a picture of Liam literally covered in EKG leads. The purpose of these leads were to try and capture his heart rhythm. I liked how they put Mickey Mouse characters on the lead's stickers in order to help Liam feel more comfortable with having them placed all over him.

While Liam was getting stuck with stickers, Dr. Portman was taking a look at Liam's echocardiogram. Shaun and I were very star-struck by being able to have such an amazing doctor. We absolutely felt blessed that Dr. Portman was able to immediately look at the echocardiogram and make an instant report. In our past experiences (not with Kawasaki's) it seemed like we would get tests performed and then have to wait a day or two to get our results. It felt unbelievably awesome that we were able to get results immediately because Liam had an expert as a doctor!

When we were finally able to meet Dr. Portman, we felt a little underwhelmed. We had read glowing reviews about him as well as been told by many that he was awesome. Instead, we met someone that looked exceedingly tired and provided us with little engagement. Basically, he walked in the door and stated that Liam's heart had significantly improved but that Liam had a heart murmur because he was extremely anemic and then left. It was a very strange appointment. (We would learn later that Dr. Portman is very passionate about his patients and was in a funk because of staying up all night with one of his very sick patients. We would also have much better appointments with him in the future).

After Dr. Portman left, his nurse came in the room and took the time to explain things a little better to us. Apparently, Liam had a blood iron level of 21 when he was discharged from the hospital. This is on the verge of needing a blood transfusion (normal range is in the thirties). Once again, this was "concerning, but not unexpected." Apparently, most Kawasaki cases result in anemia. In fact, there was a very good chance that the sloshing blood and the heart murmur that was found in Liam's echocardiogram was directly linked to his anemia. Dr. Portman felt that the heart would right itself if we fixed the low iron in Liam's blood. The reason that they decided not to give Liam a blood transfusion in the hospital was due to the massive amount of IVIG that he had been given. Apparently, a blood transfusion may negatively interfere with IVIG. So, now that we were a couple weeks out, they wanted to draw Liam's blood and see if his blood iron level had improved.  If it hadn't, then we would need to schedule an immediate blood transfusion.

Shaun and I were shocked by the information that Liam was extremely anemic. It was one of the few things that we were not pleased about with our care at Children's Hospital. We both felt that we should have been told about Liam's anemia before we left so that we could have immediately started working on fortifying Liam's diet. Yet, before we could complete the blood draw, we had agreed to complete some genetic testing.

Kawasaki Disease is incredibly rare and there is not much information about it, so we readily agreed to participate in several studies in order to provide more information that could help doctors gain important information to help save more lives in the future. One of the studies required our genetic information. Every research study has a board that approves various procedures in order to determine what would be the least amount of risk to those participating. For this study, this board decided that it would be less "risky" to get our genetic information by having us spit in a vial until it was full! It was absolutely ridiculous! Shaun and I felt very silly while spending the next 15 minutes spitting in a cup! You should have seen Liam's face! It was priceless! He thought we the were silliest people on the face of the planet at that moment! His face definitely said, "mom and dad, you are nuts!" I absolutely agreed with him and felt that a blood draw would have been a much easier facet for getting our DNA! Luckily, Liam did not have to spit in a cup. Instead, they could just use some of his blood from one of his scheduled blood draws.

If you are at all curious, here is the link with more information about the research being conducted and some of the results: http://www.seattlechildrens.org/research/developmental-therapeutics/labs-programs/portman-research-group/kawasaki-disease-program/

The next stop was the blood draw floor. Poor Liam! Once again, I chose to step out of the room in order to avoid the screaming and crying. Poor Shaun! He was once again stuck with the task of being the parent who is there while Liam is hurting and upset! Thank goodness blood draws are short! Very soon we were on our way and off to more fun and exciting things... outside of the hospital!

Kawasaki Disease: Part 18

Eyes wide awake, we turned off our alarm at 2:45am. We had tried to go to bed early and we had tried to sleep as much as we could, but today we were just too excited and nervous! It seemed that Liam was the only one able to sleep as evidenced by the soft snores that we heard drifting out of his bedroom.

Despite the lack of sleep, Shaun and I bounded out of bed and hurriedly packed the car for our day trip to Seattle Children's Hospital. Staying true to our post-hospital packing experience, we packed enough clothes, toys, medicine, and toiletries to last us a month. We just wanted to be prepared in case Liam's new pediatric cardiologist, Dr. Portman, decided to have Liam readmitted to the hospital.

Liam had been transferred to Dr. Portman's care because he is the leading expert in Kawasaki Disease in the United States (Look him up!). We were ecstatic that Liam was going to be treated by the expert! We were even more ecstatic when we learned that not only was Dr. Portman the expert in Kawasaki Disease, he was also the Director of Cardiology at Seattle Children's Hospital! We felt really, really blessed that Liam had been selected to be Dr. Portman's patient. We knew that Liam was going to continue to be in excellent care!

After our car was packed and we snuggled a sleeping Liam into his car seat, we left the house at 3:30am! Our appointment was at 7:45am because it would give Dr. Portman the whole day to run tests and evaluate Liam if it was needed. We prayed that it would not be needed.

On the road, after stopping for more coffee, Shaun and I began to really talk about our experiences with Liam's Kawasaki's for the first time. Some of the memories we shared were scary, but most of them were good. We could not help but feel blessed and an overwhelming sense of happiness for our little man's good recovery process.

One of our favorite memories was with Aaron and the "Light Show." Aaron was Liam's CNA and he was responsible for taking Liam's blood pressure every hour as well as monitoring Liam's pulse and oxygen level. While Liam was in the hospital, he was in a lot of pain... so much pain that anything touching his skin would cause him to cry profusely (I wish I was over exaggerating). This made taking Liam's blood pressure unbearable. It also made it hard for Liam to want to have anything else on him... including the pulse oximeter. The pulse oximeter was just a little probe with a red light attached to a sticker and wrapped around his big toe. It was probably the medical instrument that caused Liam the least amount of discomfort, but Liam did not care. He did not want anything on him! So, to help Liam become comfortable with getting his pulse and oxygen taken, Aaron would turn off the lights in the hospital room and create a light show with the little red light on the end of the probe. Liam was thrilled with this "light show" and it would make him giggle uncontrollably. It was so good to hear him laugh. It warmed our hearts!

Another memory that we talked about was from living in reverse isolation. We were not allowed any visitors because they could put Liam at risk at coming in contact with outside bacteria or a virus. However, this excluded other nurses and pastors. To our delight, we were surprised by a visit from Pastor Eric! He arrived right after Liam had been pushed to become his sickest and before Liam started receiving his IVIG infusion. It was a good visit and it felt good to pray intentionally about having the IVIG treatment work as it should.

One visitor that we were not allowed to see was Russel Wilson! Even though Russel Wilson came to the hospital while we were there... we were not allowed to visit because of our reverse isolation status! Apparently football players may carry germs?!? Boo! Also, the day after we left, Captain America visited!

Other visitors included nurses who brought cookies and milk, activities, and toys. There was a "Milk Man" who would dress up as an actual milk man travel our floor and give out milk and cookies. Since the Milk Man could not come in our room, the nurses made sure that we were still getting the goodies... and since Liam did not want to eat... Shaun and I thoroughly enjoyed the Milk Man's visits!

Along the lines of food, my coworkers had gotten together and blessed our family with lots of food! We had been given so many freezer meals that our spare freezer was packed to the brim. We could barely close the door! These meals had already been such a blessing! Shaun and I were both so incredibly tired that I believe that we only ate because we had those easy to cook freezer meals! In addition to the freezer meals, we had also been given around a dozen gift cards to food places! This was a huge blessing because it can be hard to travel back and forth to doctor's appointments and pay for food! We ended up using several of those gift cards to help us pay for our food on this trip to Seattle!

As we drove in the wee morning hours, the conversation also seemed to drift to a discussion about Liam's recovery timeline. We knew that a child with Kawasaki Disease typically took about 6-8 weeks to show signs of recovering. We also knew that the acute (super strong and dangerous) stage would last about 3 weeks. The goal of the IVIG and aspirin treatment was to minimize the effects of Kawasaki's on Liam's heart. Since we were currently wrapping up the 3 week acute stage, we were now on our way back to Seattle Children's hospital to get an echocardiogram (picture of his heart) in order to determine the permanent damage. We would get the echocardiogram first and then meet with Dr. Portman to discuss the results of Liam's heart. It was incredibly nerve wracking! We felt that Liam was improving, but we were still nervous and simultaneously hopeful about getting the tests back.

Kawasaki Disease: Part 17

Every year, we have a themed birthday bowling party for Shaun! This year was no different! In fact, before Liam had developed Kawasaki Disease, we had planned a SUPER party for Shaun... literally! This year's theme was Super Heroes! Unfortunately, the party had SUPER bad timing because it was supposed to take place the same week that Liam was discharged from the hospital.

After seriously mulling it over, and almost canceling the party nearly a dozen times, we had two offers that we could not refuse! My parents were going to continue to watch Jayden and the Beaty's were going to watch Liam! We could not have been more pleased with having the Beaty's watch our precious and sick little dude because they knew first hand what it meant to take care of a very sick little one.

When we dropped Liam off at their house before the party, it was therapeutic to be able to talk with them and share our experiences at Children's hospital. They could truly empathize with our experience because they knew what it was like to come face to face and live through serious illness. They also understood the concept of "hospital time" and how leaving the hospital was a joyous and scary feeling. Shaun and I felt that they understood our emotional roller coaster and our nervousness about leaving Liam for the first time since he had been diagnosed. Yet, we both felt that Liam was in great hands!

Even though Liam would only be hanging out with the Beaty's for a couple of hours, we packed like it was going to be a week vacation (and that is only the packing that they knew about!). We also had more stuff packed in the car just in case we would need to make an emergency run to the hospital! It kind of reminded me of the "just-in-case" bag that I packed when I was expecting Jayden. I had it in the trunk of my car "just-in-case" I went into labor and had to be rushed to the hospital. However, unlike my "just-in-case" expecting bag, I hoped that I would never have to use the "just-in-case" bag in the trunk of my car for Liam.

In addition to packing enough clothes for Liam to live in for a year (just kidding... well, sort of kidding), I also packed his discharge instructions because Linda, Mark, and Celeste would have to be aware of his vital signs throughout the evening... and his medicine... and two different kinds of thermometers in case one did not seem to be working properly... and Liam's favorite snacks... and... on and on.

As neurotic as my packing was, I was strangely at peace with leaving Liam at the Beaty's. It was definitely a God thing. It was surprisingly good for both Shaun and I to get out of the house and not be consumed with worrying about Liam. It also helped that Linda sent Shaun and me adorable pictures of Liam throughout the evening!

When we returned to pick Liam up, we found a VERY happy little guy! In fact, he wanted to stay so badly that he told us "no, no" when we told him that it was time to leave! The little stinker used the double "no" on us!

This night was definitely another bright moment in the middle of the recovery process!

Kawasaki Disease: Part 16

"It's concerning, but it's not unexpected"

Shaun and I became very familiar with those words uttered by all of Liam's doctors every time we reported Liam's symptoms. Those words became ingrained in our psyche and continually reverberated within our thoughts every time that Liam had an episode. Every fever, every period of rapid heart rates, every session of vomiting was concerning, but also part of the Kawasaki process and not unexpected. As long as Liam was not showing symptoms of a returning rash, swelling, or cherry lips, then the Kawasaki Disease was not getting worse. However, Shaun and I often felt the opposite. Every symptom always felt unexpected.

We just wanted our little man to get better and stay better. One of Liam's doctors said that recovering from Kawasaki's was like a forward moving spring. Every step forward would be met with smaller steps backwards. The important thing to remember was that Liam was still moving forward.

This analogy definitely proved to be true! Liam would always bounce forward after each episode and continue to make progress despite the digression. Sometimes, his relapse into sickness would only last an hour or two. Then, he would just snap out of it. It was like a micro-battle was going on within his body. Some days were definitely better than others.

The day after his first episode at home was a very good day!

Liam requested that we go outside so that we could throw rocks down an embankment. Since he was still pretty wobbly on his feet, Shaun and I carried him to a spot that had plenty of rocks that Liam could "re-landscape" for us.

While we were outside, Liam decided that several different areas needed to be re-landscaped as well. After he had his fill of maneuvering around on the rounded rocks, we were reminded of how many blood thinners he was on. Later that evening, his legs were speckled with bruises from where he had slightly bonked his legs. This was just one more thing that Shaun and I would need to continue to think about! Only soft toys and non-contact activities were added to our "paranoid parent list of approved play activities."

Even with the bruises, Liam had a fantastic time! He just loves the sunshine and being able to (somewhat) romp around outside.

When we came back inside, I really wanted to give him a bath, but he firmly decided that baths were a "no, no" activity on his "not approved activities because it might be painful" list. However, I don't blame him. His previous bath was excruciatingly painful due to his rash. Even though I tried to reason with him and explain his rash was gone... (joke was on me! Reason with a two year old?!?), I gave in and Liam received a "sponge bath" while playing with toys in the living room. Sigh.

Kawasaki Disease: Part 15

Finally, the day after our follow-up appointment with Dr. Crawford, we were able to also bring Jayden home! Yay!

Liam had also been missing his sissy! When Jayden arrived home, she immediately climbed on the couch and Liam sat as close as possible to her! So cute!

However, the more that we watched Jayden, the more that we realized that she may be feeling under the weather. So we took her temperature and discovered that she was running a fever!

So, after only 2 hours of being home, we were calling my parents and asking them to come and pick Jayden back up :(.

Truth be told, Jayden was definitely okay with going back to Nana and Papa's house! So, we sadly waved her good-bye while she cheerfully blew kisses back to us.

Early in the morning the following day, Liam started exhibiting symptoms that were on the "call Children's Hospital and your pediatrician immediately list."It was a true moment of panic for me... I was concerned that Liam would require immediate medical care and that Shaun and I would not be able to get him to the hospital in time.

Luckily, our pediatrician was more than willing to take our early morning call and we spent no time quickly rattling through our list of concerns. Liam was running a low-grade temperature, had thrown up twice, and had a general feeling of malaise. Dr. Crawford encouraged us to Wenatchee immediately in order to have him complete a thorough examination of Liam.

When we arrived in the doctor's office, they immediately saw Liam. This meant that they were delaying their other appointments for that day. It was a huge blessing that Liam's doctor was taking Liam's health as serious as Shaun and I were... it was also eye-opening and humbling. I thought back to all of the times that I grumbled because we had to wait 30-45 minutes because Dr. Crawford was behind schedule. I now had an intimate understanding about why Dr. Crawford was behind. He was absolutely invested in the care of his patients and would make sure to prioritize his care so that the most ill children would be seen when they needed it. The long wait times were actually a result of having a caring, compassionate, and competent doctor. From that point forward, I decided that I would no longer grumble about waiting 30-45 minutes for my scheduled well-child check-ups because I now understood that Dr. Crawford was probably reaching out to other patients in the way that he helped Liam. How cool is that?

While in the doctor's office. Liam kept saying "no, no dadda" or "no, no mama." Liam had decided that one "no" was not sufficient to get his point across. Instead, he began to always add two "no's" every time he was really serious about not wanting to do something. Unfortunately, most of the "no, no" language came out in the doctor's office. He would burst into tears every time that he saw Dr. Crawford or Nurse Melanie. He had a clear fear of any healthcare professional because he was pretty sure that they were going to do something painful. Shaun and I knew that we were doing the right thing by bringing Liam to the doctor's office, but it was hard to hear Liam earnestly keep repeating "no, no" through tears.

After completing an exam and consulting with Children's Hospital, Dr. Crawford told us that the best course of action would be to take Liam back home and continue to monitor his progress. If things continued to get worse over the next couple of hours, then we needed to turn back around and head to the hospital for more tests. The biggest concern was that Liam's CRP levels (inflammation) could be going back up instead of down. However, at this point, Liam was not showing any signs of swelling or rash. Therefore, they were not quite ready to re-admit him to the hospital.

As we were leaving, Dr. Crawford asked about Jayden. After hearing that she had been running a fever, he made it very clear, with a very serious tone of voice, that the best course of action was to keep Jayden away until she did not show any signs of illness for a week! It was just not worth the risk of having Liam exposed to illness. (However, he did not think that her fever was related to Liam's fever and vomiting). This was hard news to hear! We desperately missed our little girl, but we had to take Liam's recovery process very seriously. It was a Catch 22. Luckily, Jayden seemed to be initially completely okay with another week at Nana and Papa's house... toward the end of the week she was starting to miss us a little bit and asked about returning home. We were glad that she was having fun, but we were also glad to hear that she missed us :). We were certainly missing her!