Hands and house

Hands and house

Monday, November 8, 2010

A New Beginning...with a path to some answers!

      Georgia and I just got back from the Cardiologist and I am feeling a whole bucket-full of emotions but the one that rises to the top is feeling deeply thankful. The whole experience was just so very different from the one we have been walking for the past few months. The Cardiologist came in and spent almost a whole hour with us. He listened, asked questions and listened some more. Then he explained far more about Georgia's heart and what he thinks may be going on than I have ever heard before.

a healthy heart
     So, Georgia has Tetralogy of Fallot, a heart condition that typically has four components to it: a very large VSD (hole), Occlusion in the Pulmonary artery that leads to the lungs (gunk, or narrowing that makes it small), An overriding aorta (in the wrong spot a bit), and an enlarged right ventricle (from have to pump so hard to get blood through the narrow pulmonary artery). In the US, children have open heart surgery to repair TOF at around 3-4 months of age. Georgia's was repaired a few days after her second birthday.
    So.....he said that they see lots of kids from other countries in their office who are repaired later in life (like Georgia) and that it is pretty common to see rhythm issues with them. Then after the echo (which he watched and directed, taking tons of notes) he explained what he thinks is going on.

A heart with Tetraology of Fallot (not the best but you get the idea)

      He said it, " looks like, smells like and seems like a cardiac issue." Georgia's pulmonary valve (which was a mess before surgery and the surgeon did what he called a 'valvoplasty' to try to salvage it for awhile) is leaking significantly. We have known that this would happen at some point and have been surprised to have it stable for so long. Also, he thinks that scar tissue could be forming in her pulmonary artery itself (the Occlusion). This narrowing could be putting more pressure on the right ventricle and causing it to get out of rhythm.
     He also said the "Big Scary" ( a problem that could cause her heart to stop suddenly often irrevocably) is still a possibility. Understandably, toddlers are very hard to diagnose and to catch what is going on. He said that she may be having very quick VTs (Ventricular Tachycardias) and not be telling us or that with the event monitor we may have missed the true episode itself that could have been what started what I have seen as the episode.
       So.....we have a new monitor. Th is s looop monitor and Georgia will wear it all the time for the next month. It records continuously but there is still a button that you press when an event happens. Then Georgia's "Sheen" kicks it to high gear, it goes back and capture the 2 minutes before I pressed the button, 30 seconds of the current episode and then 60 seconds after that. She will wears this for a month but the staff will be talking to us frequently to let us know what they are seeing.
      Georgia was a trooper, the kids constantly amazes me. The whole drive in she was asking, "Doctor's see my heart, boom-boom, boom-boom???" Then she picked up Doug's cell phone charger and used it as a stethascope and then an echocardiogram wand (rolling it on her chest). She marched right in to the office lifting up her shirt saying, "See my heart!!!!!!" to anyone who would listen :) During the ekg she kept whispering to Doug, "Daddy look....look" and pointing to the stickers like she was so proud of what she was doing and it was the coolest thing in the world. During the echo she chilled out and ate fruit snacks again making sure Daddy was watching this great thing that was happening to her!
    The machine itself is a doozy. It has 2 ekg leads with long wires that connect to the machine, which has a holster & clip kindof like a cellphone. The nurse told us to be very careful with the connector because it breaks easily. Then she showed us the paperwork and the bill for insurance which shows a price of almost $800 if the machine needs to be replaced! So....we are now trying to figure out how to keep our wiggly, jumping girl who loves to twirl and be umm...free from clothes hooked up and not breaking the thing. At first we just tucked it into her waistband. That worked until she ran across the restaurant and it fell right off onto the floor! Then we tucked it in behind her in the carseat, and I looked back to see her swinding it from it's wires! So, we are reverting back to the wonderful world of onesies. Thankfully she is a little peanut and I found some that will work and she is tolerating them at this point...we'll see how long it lasts!
     So, I feel hopeful that we will find answers, sobered by the idea of any little thing awry in her precious heart and like always, it will take awhile to process all of what we heard and saw today...
    Yesterday was orphan Sunday at church and we got to share a little bit of our story. Today, I keep thinking again about all of the Georgia Meis out there who are waiting for families. Little ones with no one to hold their hand through operations, to advocate for them and get the best answers no diagnostic tools and advanced medicine to help fix what might be going wrong....oh how I ache for them. Would you take some time tonight to pray for them? Specifically that they would know that they are seen and known and loved by a God so big who sees them? That this is not the end of the road for them...eternity is so very close for us all. They may not have parents right now but we CAN stand in the gap and pray for them like we do for our own children. I have no doubt that our Georgia Mei is here because of the prayers of so many....there is just no other answer...I have seen SO many times now, this community come together and pray and mountains move, children find families, those on the brink of death miraculously thrive, money comes from nowhere to help bring a child home. It happens again and again and again...

"The prayer of a righteous person is powerful and effective."
James 5:16

Please help be their parents tonight.

21 comments:

Tami and Bobby Sisemore Family said...

I like the sounds of this new doctor! Can't wait ti hear what he finds out with this good monitoring. The bottom of your post sent me to tears. I sooo have the call to bring tons more home, but the money scares me, and with Jeremiah I have NO CLUE how I would ever fundraise and work as hard as I did the last 2 adoptions. Anyway, I keep thinking about those we left behind!

stephanie said...

Wow, that's a whole lot of heart info!! your Doctor sounds very direct but compassionate. Hope this month goes by fast for you, and you have more answers and a sound plan . Is surgery inevitable?
Georgia remains in my prayers! I think you are all so amazing for walking through this ordeal with so much grace and faith.

Cedar said...

Thank you for the update! Will keep praying for Georgia and the doctor to find answers. Glad you feel comfortable with this doctor and he took the time to help you understand what is going on.

Ann Trubey said...

Thanks for the update, Shannon. It is good to have answers...sounds like you are getting closer to making sense of it all, scary as it is. We sang "Mighty to Save" yesterday during our Orphan Sunday service and I thought of you. I will continue to keep precious Georgia on my mind and in my prayers. I look at our three and think, of all the things I've messed up in life, stupid tax I've paid, etc., thank God I did THIS RIGHT and these precious kids are here, orphans no more. I am so thankful, and wish I could bring home MORE.

Susan A said...

Thank you so much for sharing, Shannon, I was here several times checking for news :)

So glad to hear that you got more explanations and will continue to pray for Georgia, and also for the orphans as well.

Renee said...

Oh, it is so good Georgia has a new doctor~ it is wonderful she will be watched over with so much care and expertise. We will keep praying for her and all of you during this trying time. Praising God and asking for healing.

Sarah said...

I know that this story cannot even compare to Georgia's heart issues, but I still want to share it with you to encourage you.

I have a mitral-valve prolapse (very common) and had episodes that sound very similar to Georgia's episodes throughout high school. Some would actually last for hours and be pretty debilitating. I ended up using a monitor that sounds similar to Georgia's monitor when I was pregnant with our first son.

So, here I am 40 years old with very little problems related to the mitral valve.

Praying that Georgia's issue resovles itself and that she is healthy and happy at 40 some day!

Blessings,
Sarah

Dawn said...

Praying for your sweetheart!What a blessings this doctor is!

Miller Moments said...

So hoping that the new monitor brings clarity and understanding. I can't imagine what an exhausting journey this has been, but hopefully soon you will have real answers and know what steps to take next.

sara said...

It sounds like you're on the right road. It may still be a long one, but how wonderful to at least have some direction! Thinking of you and Georgia.

Sharon Ankerich said...

So thankful you liked your new dr and he was able to talk you through the possibilities... also for the new 'sheen'! :) Praying it shows everything they need! I am praying for you all!!!
blessings!!!

Crazy Mama said...

all info is so so good. I am so glad the doc is sitting with you, giving you the time G needs, answering the questions he can, and paying attention to all the puzzle pieces.
Oh, this is a very good start!
Nancy-of the crazy 8

Aaron and Erica said...

I know you were thankful today to receive this much information from your new doctor. I'm praying now that Georgia will keep that monitor on and not break it :) and that they will quickly find the information they need to make a plan to fix whatever is going on with her little heart.

Aaron and Erica said...

I know you were thankful today to receive this much information from your new doctor. I'm praying now that Georgia will keep that monitor on and not break it :) and that they will quickly find the information they need to make a plan to fix whatever is going on with her little heart.

BARBIE said...

Georgia's new doctor sounds like a God send! I'll be praying for her and for your entire family.

Adrian Roberta said...

Thankyou so much for taking the time to update all of us that care so deeply for your precious little family. We continue to lift up Georgia and your right....we need to keep praying for all the 147 million ones out there still waiting.....

Wife of the Pres. said...

Yeah! Praise God for Georgia's new "sheen" and doctor. Sounds like the day could not have gone much better! Georgia sounds just like S at her cardiology visits. Bless their precious hearts!

So thankful you are moving forward now in getting answers. And thankful Georgia has you and her Daddy and brother and sister to be right beside her through this.

HUGS! Leslie

Tara Anderson said...

Thanks for the update. I like what you're hearing from this new doctor...sounds like you're on a good path to getting some solid answers. Which, by the way, I'm still praying for! Love you!!!

Kristi said...

All that information sorta left my head spinning, but thanks for sharing! I will be praying for Georgia!

Christina said...

Our family's thoughts and prayers are with your family. Love the adorable photos that you share! I have been involved with the heart valve market, specifically cardiac allograft/homograft tissues. Not sure what your cardiologist and/or pediatric cardiothoracic surgeon will recommend for treatment of dear Georgia's pulmonary valve, but a homograft/allograft pulmonary valve is often an excellent option with wonderful advantages over bioprosthetic(non-human) heart valves. (i.e. enable a patient to not be on anticoagulative therapy for life and other wonderful advantages, which is why they are implanted in young children and active adults so often). The newest pulmonary valve is called "synergraft". Just wanted to share. Our thoughts are will all of you.

Sherry and Bill said...

What a lot of information - how amazing that Georgia takes it all in stride - she is indeed a very special girl with very special parents. Our love and thoughts are with all of you as you climb yet another hill together. Sherry and Bill

LinkWithin

Related Posts with Thumbnails