Semper Fi

1st Lt. Ryan K. Iannelli

I am so thankful to the soldiers who have fought and are fighting for this great Country.  Thousands of men and women have lost their lives in service battling for our freedoms, and I'm so sad today to hear that yet another a great man of honor has fallen.

Dallas and I knew Ryan, we mostly new of him as Iannelli (some called him Neli), from ORU where we attended college.  He played Baseball for a year with Dallas and then played ball with Dallas' brother in subsequent years.  I don't think there is anyone on this earth who could say one harsh word about Iannelli.  He was a good and decent man and it was evident that he loved Jesus.

There is no doubt in my mind that he is resting in the arms of Jesus today, completely whole and healed. He is a hero, and made the ultimate sacrifice for our Nation.

I am so thankful to all of the service men and women fighting day in and day out, unseen, for our protection.

Praying for the Iannelli family today.  Remember to lift-up our soldiers in prayer!

Ryan was a true Marine, always faithful to God, family, country and the Corps...Semper Fi!

Blessings,

Sarah

Our Little Missionary

Rhett doesn't know it yet, but he is going to become a little missionary to pediatricians, cardiologists, friends and family.  Through his testimony, these people will see a miracle.  I believe it.  

Let me just start by saying that it is taking everything within me to not be angry, emotional and devastated.  Even though I am typing with tears pouring out of my eyes, I know that I know that my child is in the hands of the most amazing creator, healer, author and finisher.  I know that He is hearing our prayers, increasing our faith and touching Rhett's heart.  I know that Rhett will be healed.  I know it.

  I know that God does not waste our pain and He has the amazing ability to turn our pain into purpose.

That being said, our appointment at the Cardiologist was not wonderful this afternoon.  I know that they have to tell you all of the relevant information and some worst case stuff, but sheesh.  

Rhett's cardiologist, Dr. L, reviewed his echo, his chest x-ray and and EKG that they did on him today.  She said that his heart is very large on the left side and that is concerning.  She said that there was a lot of blood leaking.  She also said that looking directly above the mitral valve to see where it is leaking, there are more concerns.  Most of the time they can pinpoint a leak in a certain area of the valve, but his appears to be a broad-band leak across the entire valve.  This could mean that the valve itself is broken or not working properly.  She felt it very unlikely that this stemmed from his Kawasaki Disease, but she didn't rule it out.  

He will have another Echo in four weeks to see if the leak looks the same or worse.  If it is either of these things they will put him on some sort of blood pressure medication to do something or other (I can't remember).  It will not fix the leaking or the valve, but it will do something:).  After that, the size of his heart and leakage will be monitored to see if something more immediate needs to be done.  Mostly repair or replacement of the valve.  

There was mention of some awful things that I refuse to talk about or let get into my head and thought process.  In Jesus' name, I believe that Rhett is healed.  I refuse to believe the lie of fear!  

 during his EKG today

Specific prayer requests:

For his mitral valve to work properly, for it to pump the right amount of blood where it is supposed to go.

That the size of his heart would be normalized and corrected. 

For his overall health and protection through all of this.

The words of this song continue to play in my mind and they have been encouraging to me this past week.  It is based on Mark 4:37-41...

You faught
but you were just too weak
so you lost
all the things you try to keep
now you're on your knees, you're on your knees

But wait,
everything can change,
in a moments time you don't have to be afraid,
cause fear is just a lie
open up your eyes

And he'll break
open the skies to save
those who cry out his name
the One the wind and waves obey
is strong enough to save you

Look
now is not too late
lift up your head
let the rain fall on your face
youre not far from grace, your not too far from grace

And he'll break
open the skies to save
those who cry out his name
the One the wind and waves obey
is strong enough to save you

I know the weight of this world can take you down like gravity and I know the current of yourself can take you out, out to sea but hold on, hold on

And he'll break
open the skies to save
those who cry out his name
the One the wind and waves obey
is strong enough to save you

I just cannot thank you enough for praying!  We have received so many emails, calls and texts letting us know that family, friends and strangers all over the country are praying for our sweet Rhett.  We are so very thankful and blessed to be so covered in prayer.  

Stay tuned for Rhett's miracle!  

Blessings to you all!  

Sarah 

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!

Kawasaki Disease

I should be sleeping right now, considering the lack of sleep I have experienced the last 4 nights, but my mind has been racing all night.  Tomorrow morning we will take our sweet boy to the children's hospital to find out what illness has been tormenting his tiny little body.

Rhett and I ended up in the ER on Tuesday night after his fever spiked above 104*.  They took ultrasound picts of his giant lymph node and gasped and awed over how large it was.  Praise the Lord, there was no infection in the node itself and nothing was abscess.  They also did blood work just in case the ultrasounds came back with something to worry about.  They let us go before the blood work came back and told me he most likely had Adenovirus.  His eyes were very red, high fever and throwing up.  These are all symptoms of Adenovirus.

Today we had an appointment to follow up with our Pediatrician and Rhett has still had fever and has been acting miserable.  We walked in to our Dr.'s office and right away I could tell he was concerned.  He had gotten the blood work from the hospital and said that Rhett's white blood cell count was very high...too high to just be a normal infection, he said.

He believes that Rhett has Kawasaki's Disease and needs to be treated at the Children's hospital by the only children's Infectious Disease Dr. in our area, Dr. Chang.  He will be given an IVIG (?, don't really know what that is), and that will help kill off the white blood cells that are taking over in his body.  Basically, from what I understand, Rhett's body is fighting against itself instead of fighting off this disease, his white blood cells are taking over.  It started with an ear infection, and this other disease develops from some sort of infection in the body.  Some of the symptoms mirror those of Adenovirus.  Rhett has four of the symptoms of Kawasaki Disease; high fever, fever for over five days, swollen lymph nodes, and very red eyes (the whites are VERY red).

So, we will be at the Hospital at 7:30 tomorrow morning for more testing and will know if he is in or out of Children's by 11:30.  Dr. H wants to have him treated no later than 12:00 tomorrow afternoon.

I had planned to take him to Children's right away, but Dr. Chang thought it best to give his body 12 more hours to fight off whatever this is, do blood work in the morning to compare to blood work from Tuesday, and if his white count is the same or increased, we will admit him immediately for Kawasaki Disease treatment.  If is count has decreased, it is likely another virus.

Basically I was completely filled with fear when I heard about this disease and the plan Dr. H has to treat him.  Now I am filled with Faith and hope.  I know that our little boy is going to be just fine and that he is completely covered in prayer.  God has a plan for his little life, and He will be faithful to complete it.

I called some people and emailed my bible study girls, family and pastors for prayer. Our Children's pastors came over tonight and prayed over Rhett and are believing for healing.  Rhett was running around, jumping, playing, talking and EATING by the end of the night.  He has not eaten more than a bite in 4 days. He has seriously laid in my arms listless for four days.  His lymph node is barely noticeable anymore, and he lit up like a Christmas tree when Dallas walked through our front door after being out of town all week.  Even if the tests come back with high white blood cell counts and he needs to be treated, I know that all will be okay.

Please say a prayer for Rhett.

Golf ball lymph node?!

This poor sweet baby has been miserable carting around a golf-ball sized lymph node on the right side of his neck.  We marched our up.all.night cranky selves into the Doctor's office today to give him a gander at whatever was happening to our little munchkin.  Prognosis was...swollen lymph node, ear infection and some sort of virus causing vomiting, fever and giant nodes.  Poor thing.  If it is not shrinking by Thursday then he will have to get a CT scan at the hospital.  We are praying it will get better.  Doc says nodes can get infected and have to be drained...I pray not!

Unfortunately for Rhett, Augmentin is like seriously the nastiest medicine ever created.  It is like liquid chalk with a smack of NASTY!  My poor baby spits, gags and wipes his tongue off when I try to get it down his gullet.  Hopefully he is getting enough to kick the virus and clear up the problem in his lymph node.  Please say a prayer for our sweet little Rhett.

Fortunately for us, Rhett is not the medicine fighter that Jude was!  We finally gave up on Jude taking medicine orally as a toddler and just asked to have all of his antibiotics mixed at a compounding pharmacy and turned into suppositories...so much easier!!!

Rhett is super cuddly when he's not feeling like himself.  Since D is out of town all week, I will enjoy all of his sweet snuggles and have him all to myself.

We heart long weekends!

We started the weekend going crazy out of our minds with the loudest instrument known to mankind...serioulsy, who invented the drums...I need to know!  It may be causing ringing in mom's ears, but this kid is having the time of his life...

Thanks again, Aja and Dustin!!!

We went to Texas over Labor Day weekend to visit my sister's family.  It was such a great trip, and the kids had such a fun time together.  We MUST find Jude some boy-ish roller blades of his own...STAT!  

I finally got my antlers hung before the weekend was over.  I like them, but they may just stay for a season or two.  Eventually I'd like to have a large set of bookshelves on this wall.   

 I want to have some built-ins installed on that far right wall where my floating shelves are right now.   I think shelves top to bottom would be great in that currently useless space!  

 The antlers add a little something and make the room feel more interesting, I like it.  

This is the reaction I typically get when this silly kiddo sees the camera come out.

  Anyone else take a fun trip, put their boy in princess rollerblades or invest in earplugs?  

I hope you all had a wonderful non-laborious weekend!