The update I know a few were wondering about. We got the results from the cath......hold your breath.... MORE TESTS NEED TO BE DONE...Yup...thats right. We are scheduled for a MRI and MRA on Halloween at 2pm. Lily will be sedated again...poor thing, from what I am told we should be out of there by 5pm in time to take the boys trick-or-treating...but that is the least of my concerns, worse case scenario, I have friends or family take them for us.
Any who, back to the subject at hand. She will be having the MRI/MRA done to take a better look at the anatomy of her heart. The know what is going on...and I am going to try to explain this to the best of my ability...here it goes
Ok...As I type this refer to the picture below, it will hopefully help. As you can tell by the drawing below (Compliments of Dr.Rhee) Lily does not have a normal heart what so ever. She will be needing a full valve replacement on the left side. I asked if it was a possibility for an artificial valve but that was a NO, because of how little she is. They don't want to have to go back in any time soon after this next surgery.
So.... with that being said, they want to take the valve from the right side of the heart and use it for the left side. They will hallow out the right side and then use an artificial valve on that side...I know I know...I just said they didn't want to use an artificial valve, but there is a catch to that. They don't want to use one on the left side of the heart, but they don't mind using one on the right side. From what Dr.Rhee told me, you can live with low pressures on the right side and a leaky valve on that side but you can't live like that on the left side. So as long as we get that Left Valve up and running correctly, then our main concern is out of the way. Now...as to why they want to replace the valve, well, somehow, someway, Lily has a kink of some sort right above the aortic valve that is causing us about 1/3 of the pressure build up.
Down at the bottom of the aortic valve is where lays our other problem, the bigger problem. From what I have been told, there is a membrane that is wrapped around the valve cinching it closed. That is where they focused on the ballooning during the cath and it didn't budge in the least. This is where 2/3 of the pressure build up is. We are still only at a 60% grating(However you spell that) but we wonder how long that pressure will hold before it is to much.
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Oh one more thing before I end this, I am still working on the montage...I haven't had as much time as I thought I would...then again...who am I fooling...me have time? That is a humours thought.
2 comments:
Time? What is time. Anyways, still thinking about you and praying for you.
Laura and Lillian
I LOVE updating on Lily as she and Eden have to be special friends being born on the same day. Thank you as well for the beautiful tribute to Eden. That was a bitter sweet day for me as well. We will soon approach the day when Eden has been back with the Lord longer than she was here with us on earth. I am a little nervous for that day to arrive. I pray that they can postpone surgery as long as possible and that the valve replacement goes well. Lily is so strong and a very special little girl. She will amaze everyone.
Keisa
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