Sunday, April 30, 2017

We prepare for our Warrior Princess's 5th OHS

So we finally met with Dr.R for the official results of Lily's cath. After doing all the research from the information I was given, I knew what was coming, but it was nice to be given the rest of the technical terms and names. So let me catch you up. 
 Lily's coarch repair that was done at 5 days old, hasn't grown. When they attached her vein, they had to suture it all the way around, in a circle, which in turn has created scar tissue, and it is strangulating her arch. blood goes up into it, but all of a sudden runs into a traffic jam, because it is such a narrowing (stenosis). They will try to balloon that, it is in such an area, that a stent isn't an option. We haven't talked about if that doesn't work, it is something that I will bring up at the surgery consult. 

That is one repair. The second repair is the Ao-Rv Fistula. First, a fistula means, 
  1. an abnormal or surgically made passage between a hollow or tubular organ and the body surface, or between two hollow or tubular organs.
Ao= Aorta   Rv= Right ventricle  

So with that being said, Lily has a passage going from the bottom of her aortic valve to her right ventricle. What I was I told, a patch will be put in place again. So, this is where her original VSD was. The patch was disturbed when we had issues with the Left ventricular outflow tract obstruction (LVOTO). According to Dr.R, the original patch has completely corroded, leaving very little, if any of the original intact. So they will replace that. I am interested to learn what type of material they will be using this time and if they feel we will have a better chance of it lasting, or if we will end up having to replace it again down the line. I know some things can't be foreseen, like this, who would have thought this patch would have done this? But with Lily, we can't close her VSD in the cath lab, it requires open heart surgery, so it is a very valid question for me to ask.

The last repair that needs to be made, is replacing her St.Jude's valve. I have included a picture of it below, so you can get an understanding of what it looks like
The valve is made of metal and synthetic material. The leaflets are metal, so when they open and close, if you were to send a cath through there, they could snap the cath off, and it could kill her. I just wanted to help those understand, who don't know the heart as well as some. 

Lily has a 19mm valve put in when she was 2. The way it was explained to me then, that was the size of a petite adult female. She should never of needed it replaced unless, the valve failed, there was and infection and we had to replace it, so on and so forth. So after all my research I did and Dr.R confirmed the research I did, she has to have it replaced because her valve is "failing" at the top of mechanical valve. Meaning it is coming detached. Their solution to this problem is to put in a 21mm valve instead.

Now I have questions about that too for the surgeon. Trust me, they are written down, he's gonna love me. I have never met him, he has never met Lily, doesn't know that she throws curve balls in the middle or surgeries. So my anxiety is through the roof, thankfully my doctor has given me something to help with that. I spend a lot of time listening to music, clearing my head, and praying.

I finally started talking with Lily about her upcoming surgery, she seems to be taking it well, her biggest worry is, that her heels are going to hurt. She remember waking up from her cath and her heels hurt so bad, that we had to prop her feet up with pillows. I told her she wouldn't even notice her her heels hurting.

Then she turned to me, her eyes wide, and says, "Mom, you'll be there right? You'll stay at the hospital the whole time, you won't leave me, because you never left me when I was a baby. You won't leave me now, will you?"   

I scooped her into my arms snuggled her close and told her I won't leave the hospital until she leaves to go home. I heard a huge sigh of relief, I heard her heart slow down, she kissed my cheek, hugged me, and then ran off. 
I have been blessed with this amazing Warrior Princess, who's heart still beat strong, even when it is tired. She loves her life, she lives her life, and these last 9 years have been the best because I have had this sweet girl in my life.


cici said...

Much love to you both, together you can do this!

lylian bergson said...

Tyler and I send lily many prayers and love for a speedy recovery