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Have you ever been so scared, you stop crying from fear, and your next reaction is anger? I keep bouncing between the 2 at this moment. Between utter fear and and raging anger. I had a dream the other night, that it was Lily's surgery day, and she is begging me not to let them put her under. Tears are pouring down her face. She looked at me and said, "Mommy, if they put me to sleep, I will never wake up." I stroked her head and kissed her, while she fell asleep. Shortly into her surgery, I was paged, and was then told, she passed away. She was right. she never woke up. I woke up crying, I know it was just a dream, I know it wasn't real, but it felt so real.
That is how it feels, daily, I live with the constant fear in the back of my mind, that Lily's heart could stop at anytime. Yet I try to block it out, live each day as a blessing, and thank the Lord for another day with my girl, and of course all my children. I have good days and I have bad days. I try so hard to compartmentalize, so I don't constantly feel on edge, but with this being our 6th surgery, I am so scared. So very scared. So I spend a lot of time on my knees, asking to borrow strength and help with peace of mind. We have 5 weeks and 3 days until we leave to San Diego, and with each passing week, as it creeps closer to us leaving, my brave face is starting to falter. I keep staring at her beautiful little face and memorizing every detail of her, because as much as I know that dream was not real, it still sits in the back of my mind, and has rattled me to the core.
I have started this blog so many times and have stopped it because I have been angry about it all. Those who don't follow me on Facebook, let me update you. 3 days post-opt, we found a new hole in Lily's heart. It was close to the other one, so we thought it might have just been the stitching came a little undone in that area. Well fast forward from October to April. The mummer we started with has gotten louder and much larger.
Dr.Rhee ordered us to do a CT dye scan, so we could get a better look at her heart and hopefully build 3D model of her heart. We succeed in doing so, but the answers we were looking forward was not a straight forward answer like we were hoping for. The hole in her heart is in the right ventricle and right next to her Onyx valve. The 2 different trials plugs and patches they tried at PCH wouldn't work. One would complete block the flow of the valve. which would kill her. The other one, we would run the risk of it causing a stroke.
So we reached out to Boston. CHOP, and Rady (SD). Boston suggest coils, which do not work for Lily. She seems to throw them. CHOP suggest a plug for a fix for now, but knows she will need surgery down the line. Rady seemed to be the only one who gave us something to think about.
Dr. Nigro suggested the Ross procedure, which is where they take the aortic valve and replace it with the pulmonary valve. Then the pulmonary side is replaced with a cadaver valve. What would this mean for Lily? It would be life altering! She would no longer have the mechanical valve, which is the reason she is on the blood thinners. She would be able to play like a normal child. She would be able to have children without the complication of blood thinners, because there are many. If the cadaver valve was to fail, at that point, we would be able to use what is called a Melody or Sapien valve, which would not require blood thinners. They would be able to place the via cath.
As much as we don't want to do another surgery, this hole has happened twice already. The area has deteriorated from the multiple surgeries, the patches we have put on it, have not worked because the area is to thin. This surgery would reinforce the wall between the right and left ventricles. It is a pretty drastic surgery but the best option in the long run. This decision wasn't made lightly but it was made wisely.
Now, here comes the big part. Could this be done here in AZ at Phoenix Children's Hospital, by Dr. V? Yes it could be. Our preference would be Rady San Diego, Dr. N, because he has done 4 previous surgeries with Dr. C. He was the one who suggested this. I feel that he is the one who understands her heart best. If a surgeon here in AZ couldn't come up with this, why should I trust that he knows her heart best, when he himself has said many times over how "complicated" her heart is. So Dr. R has said he will send to Rady for clinic visit, and for a cath, and when insurance pushes back, which it will, because they will want the surgery done here in state, he will have Dr. V write a letter for the insurance as to why it needs to be Rady.
So now we wait. We wait for the call from Rady. We wait for our lives to change. We wait for Lily's life to change. We wait for our new tomorrow.
