Hallelujah

Did you know that some consider 'hallelujah' the highest shout of praise?

Last night while I was up at 1 am I started thinking some horrible things and I went back to my staple scripture that has gotten me through so many minutes and hours of bad dreams, day dreams and scary thoughts these past 6 weeks.

2 Corinthians 10:5 ~ We demolish arguments and every pretension that sets itself up against the       knowledge of God, and we take captive every thought to make it obedient to Christ. 

I couldn't fall asleep last night and my mind has been wandering for the last day or so, just wondering what we would encounter this morning, how we would react and how we would move forward.  I was not doubting God's perfect healing for Rhett, just open to the possibility that we might be in for a long haul of faith for healing.  I had considered that we may have to believe and trust in God for some time before the results were evident.  To believe the battle was already won, and to daily trust that despite what the doctors say, Rhett is in God's hands and His protection over him is much more than we could ever offer.

This morning we are shouting hallelujah, no matter what, hallelujah to our healer, redeemer, our restorer, our strength, our help, our provision and our strong tower.  How do people live without Him?!  I would be nothing in His absence.

So, on to Rhett's testimony.  We took Rhett in to his cardiologist appointment this morning.  He needed to have a follow up echocardiogram to see the condition of his mitral valve that was leaking severely 4 weeks ago following his stint with Kawasaki disease.  His doctor was 99% sure that this leaking and heart enlargement was unrelated to Kawasaki's disease, but was just discovered during his echo.  We went today knowing that we may have some choices to make.  They presented us with a few options last time, but followed that up with "none of these are good options based on his age".  These included repairing the valve, replacing the valve and blood pressure meds to control the left side of his heart becoming too large.   Dallas and I added a miraculous healing to the list of options.

I studied the echo machine while the tech was doing her job this morning and tried not to think too much about all of the red and blue that I saw in that 3rd chamber of Rhett's heart.  He was such a good boy and so cooperative during the entire process.  We went into his room and waited for our cardiologist and prayed together, again.

When the Doctor came in she was so much nicer and more personable than last time.  She chatted and greeted Rhett and then looked at us.  She shook her head said, "Well, you guys, Rhett's mitral valve looks SO much better!"  She said that she didn't really know what could have happened, but it went from a severe leak enlarging his heart to a mild case of regurgitation (that is perfectly normal and nothing needs to be done for it).  She said that she would chalk it up to an atypical case of Kawasaki disease (you know, the thing she was 99% sure it was not caused from).  I asked her if she has seen this happen before and she shook her head and said, "never".   I just said, "Praise God" and told her that we have been praying for him.  Though she will rule this as an atypical KD symptom, we know better.  We know that God touched Rhett's little "big" heart and healed his valve.  He provided us with peace from the beginning and was faithful to do a work in our boy.  Hallelujah!

He will go back for another echo in 3 months, 6 months after that and then yearly until they are comfortable releasing him from being monitored.  I just couldn't have asked for a better result.  God answered our prayers completely.  Rhett will grow up to know that God touched his life and we will teach him about what faith means and how faith as small as a mustard seed can move mountains!

Click here , here , here and here to read more about Rhett's testimony.

Also, I just want to say thank you, from the bottom of our hearts, to everyone who has been praying, checking in with us, sending us scriptures, linking bloggers and friends to pray and for encouraging emails and texts.  We are so very blessed to have people in our lives lifting our child and family up to God.  Some of you I don't even know, but I am ever so grateful.  Thank you!

Our healed boy!

Childlike Faith

We were caught off guard by Rhett's Faith for his healing:)....

Mark 13-16 
People were bringing little children to Jesus for him to place his hands on them, but the disciples rebuked them. ¹⁴ When Jesus saw this, he was indignant. He said to them, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. ¹⁵ Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it.” ¹⁶ And he took the children in his arms, placed his hands on them and blessed them.

Echocardiogram Concerns

So I was totally planning to get the a-okay from our pediatrician on Rhett's recovery today...you know, like a big thumbs up stating that this whole thing is behind us.  Well, unfortunately that's not what we got.  Dr. Henley had gotten Rhett's echo results from the cardiologist and there are some concerns.

Rhett's actual diagnosis on his heart is Mitral valve disorder.  Basically his mitral valve is leaking.  This valve is located between the 3rd and 4th chambers of the heart and takes the blood from the third to the fourth chamber (from what I understand).  When it goes from the third to the fourth, his is pumping some of it back into the third chamber instead of relocating it to the fourth.  Dr. H said it is not uncommon for kids to have mitral valve disorders, but 99% of the time they are classified as mild and they outgrow the problem.  Rhett's is classified as severe.

We don't know how much is leaking and how much is making it where it is supposed to go. We don't know what will fix this or what can be done to remedy the problem.  I'm not really wanting to research this right now for fear of what I might find, or what may scare me more than necessary at this point.  We will meet with a pediatric cardiologist next week to find out more about what needs to happen and what all of this means.

At the beginning of our conversation Dr. Henley thought this was unrelated to the Kawasaki disease.  He thought this was possibly a birth defect that wasn't detected until now.  Then, he checked Rhett's heart with the Stethoscope and picked up a murmur, which he never had before.  He checked the hospital records from this weekend to see his vitals and they also showed no murmur.  This led him to believe that this possibly is a result of the Kawasaki illness, but he can't conclude that for sure.  One thing is for sure, our doctor is the most thorough doctor I know, so if there had previously been a murmur, he would have caught it.  I guess when you detect a murmur you go and get and echo done to find out what is causing it.  Since we already had the echo we know the cause of the murmur.

We continue to have faith and believe that Jesus will heal our sweet boy.  Completely heal him.  He doesn't do things halfway, so I believe that Rhett will be healed.  Healing could mean several different things, but I am believing for the picture of health as an end result of whatever is in-between.  We definitely appreciate continued prayer as we walk through this next step on this journey with Rhett.

Thank you for praying!

One of our favorite new things Rhett is saying is "No-fing".  When we were in the hospital we would ask him something like, "Are you feeling okay?" or "do you want to eat?" and he would just say, "no-fing" 'Nothing' totally doesn't make sense, but he knows what he's talking about.  Last week when I would try to get him to take his medicine he would very politely say, "no thank".  It was pretty cute, especially when he would get angry from all of the asking and I would get a very agitated "NO THANK!".

Matthew 11:28-30

 “Come to me, all you who are weary and burdened, and I will give you rest.  Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”

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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!