A Harsh Reality

Eden finally came back from her cath after almost 4 hours!

We were amazed at how long it took to do her cardiac cath, but grateful that she is back and stable for the moment.  I wish I could tell everyone that Eden is doing better and that her cath went great, but unfortunately I can not.  Eden has been getting more and more sick the last couple of days.  They have increased all of her medications, her ventilator settings and her diuretics and she is just not responding.  She is also still retaining so much fluid that she looks like the dough boy.  Her catheter did reveal some interesting finding though.  I will mention the good things first.  They found out that her left ventricle is a good size and will try to keep it with her next surgery.  They also found out that the band they placed on her pulmonary artery during her first surgery still looks good and it's not really her heart causing her lung issues.  The dangerous news is that they discovered another narrowed section of her aorta.  This piece is where the aorta comes off the heart and is causing a very high pressure gradient in her heart and lungs.  All of her doctors say this explains exactly why she is so sick and can not get any better.  The very perplexing and mysterious thing is that this has never presented itself before now.  She has had other caths and so many x-rays and echocardiograms (ultrasounds) of her heart and they have never once seen it.  They also do not know how it happened or what could cause it.  bottom line is that the diameter of her aorta in that sections should be around 6 mms and hers is barely 4 mms.  This will have to be fixed surgically by patching that piece of aorta to make it larger.  This surgery is very risky as it is not done that often and mixed with her other problems, not good.  Her team of surgeons, yes they think that it will take all three of them to work on her at once, will have to repair her aorta, patch and close the two large holes in the middle of her heart and repair her mitral valve all in the same procedure.  Hence we go from high risk to EXTREMELY high risk.  They are also worried about how she will handle the operation because of her very sick lungs.  Waiting is not an option as she is getting worse so they said it will be in 7 to 10 days max.  The entire team of cardiologists and surgeons will meet again in Tuesday morning to discuss exactly when to schedule her.  At that point it is all in the Lord's hands.  I know that Eden is so strong and has proven to be such a fighter.  I pray that she has more left in her "reserves" that will amaze everyone.  I do believe in miracles and if anyone is deserving of one, it's my little hero Eden!  I have chosen not to post any recent photos as they are a little hard to look at.  Her hair is getting lighter and is not dark brown any more, it's more of a beautiful strawberry blonde.

I thank you all for your love, support and prayers.  I ask that you please pray for Eden this upcoming week that she will be strong.  Even if you do not pray for yourself, please pray for her that her surgeons will be guided as they work on her and that she can withstand the procedure.  We feel so blessed despite this trial and are forever thankful for wonderful families and friends.