Monday, September 19, 2011

Adios Kawasaki!

Isn't this the cutest little patient you've ever seen?!  He is such a trooper and a good little guy.  I didn't know my love for him could grow even bigger, but it has!


So, Friday morning we reported bright and early to the Children's hospital to have blood work done on Rhett to compare it to blood work that was run on Tuesday.  We met our Pediatrician after the blood work to go over the results and I was convinced that it would be totally normal.  I was shocked (mainly because Rhett was acting much better) when our Doc told us that they were much worse, almost 100% worse.  Something that was supposed to be at a level of 5 was at 76.  (Clearly my medical terminology is pretty bleak, but stick with me:).  Dr. Henley spoke with the Infectious Disease Specialist (the only children's IDS in town), and he wanted to spend some time with Rhett one-on-one to see how he felt about a diagnosis of Kawasaki Disease.  We met with Dr. Chang and he felt, at the time, that Rhett was too happy and active to have Kawasaki disease.  They swabbed our boy to test for 14 other viruses, one being Adenovirus (the one he most likely had).  He released us from the hospital with strict orders to report to the emergency room right away if Rhett developed any additional symptoms of Kawasaki.  Namely a rash, strawberry tongue, swollen and feet or peeling skin.  Rhett already exhibited 4 of the symptoms of Kawasaki, including white blood cells in his urine.

We were breathing a sigh of relief when we left the Children's hospital and went to pick up Jude from Dallas' parents house.  I put Rhett down for a nap over there and when he woke up, 2 hours later, his temp was through the roof.  I'm not sure how high it was, but when we got to the emergency room 45 minutes later it was still 103*, after motrin.  We were stuck in the ER FOREVER so they brought us a popsicle for Rhett.  He stuck out his tiny little tongue, and would you believe it looked like a tiny little strawberry?!  It was SO strange.  You could see what looked like strawberry seeds and it was really red as well.  This "strawberry tongue" was symptom number 5 for Kawasaki Disease.

The ER consulted with Dr. Chang and they admitted him to the Children's hospital Friday night around 8:00.  Dr. Chang met us there and basically told us that he had been second guessing his choice all day and decided that he would rather treat for Kawasaki's than risk not treating.  Also, he had just received one of the test results back from that mornings virus swab and it came back negative for Adenovirus, which was really the only other virus with similar symptoms as Kawasaki.  Apparently if not treated by an IVIG, Kawasaki disease will never get better.  The only way to know if a child had Kawasaki disease after the fact is if they end up with cardio arterial disease, heart aneurysms and platelet clotting.  All of which are very dangerous and scary!  We were happy to do the treatment at this point.

To treat Kawasaki disease they use and intravenous immunonglobulin (IVIG).  This was explained to us as an infusion of antibody from thousands of blood donors straight into Rhett's blood stream.  The infusion took just under 12 hours.  Rhett experienced and allergic reaction to the IVIG in the first 15 minutes of treatment.  His temp went from 98.9 to 101.5 in 15 minutes.  There were a few dangerous risks/side effects that were possible from the infusion and the temp was the least dangerous, so we were thankful that is the one we got!

After the infusion was complete (around 2:00 p.m. on Saturday) Rhett's eyes were no longer red, his temp was down and he looked SO much better!  They told us before we started that if it was indeed Kawasaki disease he would quickly improve and most of his symptoms would vanish almost right away after IVIG.  His fever came back around 4:00, but quickly went away after a dose of aspirin to regulate his platelet level that was most likely causing the fever.  It was hard to tell if he was feeling much better because he was so incredibly tired.  A nurse had to check his vitals every 15 minutes for the first 3 hours of the infusion.  He screamed and cried every time he saw them.  After the first three hours they checked him every hour for the remainder of the infusion and then every fours hours for the remainder of our hospital stay.

They initially told us they would have to monitor him for 48 hours after infusion completion,  but Rhett was SO active and happy and healthy Sunday morning and his vitals were great, so they said we could leave after the 24 hour mark from his last fever.  We checked out around 6p.m. on Sunday!  We were so thankful to not have to stay another night in the hospital.  This means we will have to travel back to the hospital Monday and Tuesday for an outpatient echocardiogram and follow up with Dr. Chang, but I'll take it!

For the next week Rhett will be on a high dose of baby aspirin to help out with the blood platelet situation, and then a low dose of aspirin for the next three months.  He will get another echo in three months to confirm his heart was not harmed from the Kawasaki disease.  Also, he is no longer allowed to receive live immunizations.  I'm not sure why, but I will find out more on Tuesday.

Kawasaki disease is sort of a mystery in the medical world.  It's difficult to diagnose but very dangerous if it goes untreated.  They don't know what causes it and how it materializes. IVIG is the only way to treat it and the Doctors don't have any clue how the IVIG fixes the problem, it just does.  They assured us that in 5-7 years they should know more about it.

So much went on over the past three days, but this is what is coming to mind right now.  God answered our prayers and our sweet little Rhett was healed.  I firmly believe that all of the pieces fell into place right when they were supposed to for his diagnosis and treatment.  We are so very thankful for the wisdom and knowledge of our doctors and for that prayer to be answered.  We had possibly one of the BEST experts of Kawasaki disease right here in our town.  He has published papers on this disease and studied it thoroughly.  He also informed us that this disease is often misdiagnosed because of its rarity, and that he was impressed that our pediatrician caught it early.  Thank you so much for praying for us and for all of the emails, texts, phone calls childcare for Jude and meals.  We are so very blessed!

Before IVIG was started.  Poor thing!  

Here are some pictures of our stay at Children's room 213! Most of these were taken a few hours after infusion...

 Trying to escape!  It was so sad.  He would raise his good arm and point to the door and say "meeeeeeez" (please).  

 Walking the halls.  He hadn't walked this much in 6 days!  

 Our lookout point over the city!  

This picture makes me happy:) He thinks he's drinking "fophee" (coffee).

Waiting to be released!  

I am so very blessed that we serve a God who answers prayers and heals our bodies.  He alone is worthy of our praise!

7 comments:

Aja said...

Praise Jesus! I'm so happy that Rhett's ok, I just want to cry! I hate that we're gone and can't come see you guys :(

Sarah said...

Aja- You have been with us in prayer! We are so grateful for you, thank you!!!

ME :) said...

So glad to hear! I have been praying hard this week! I will continue to pray and hope the echo goes well :)

Thanks for the updates :)

katie@tulsadetails said...

Seriously, what a miracle! I have been praying for Rhett since I saw your post and am so glad your prayers have been answered. Continued prayers for his health!!

Megan B said...

Precious Rhett - I'm so happy they were able to diagnose and treat him effectively! I hope all goes well with the echo!

Alie said...

I'm so glad that everything went so perfectly and you all are home! His little heart is in our prayers still. So glad to see an update, we've been thinking about you guys tons.

Sharstin said...

so glad that rhett is doing better--what a lil trooper!! i am sure the last little while has been so hard for your little family. I hope the echo goes great, and you will definitely be in my thoughts and prayers~