Surgery consult....Check...Anger and a million emotions...double and tripple Check!

A hundred thoughts, a thousand emotions, all jumbled, trying to be released, to be made sense of, but the only one I can grasp right now is anger and frustration. Screaming in my pillow seems like a grand thing to do right now but it does not seem very mature. I say screw the maturity at the moment. There were a handful of things I wanted to blog about tonight besides this appointment, such as crazy drivers, people watchers, the obscenities of music on the radio, motorcyclist's etc. Yet here I am, and the only thing I seem to be able to hone in on is the surgery which needs to happen "soon" but yet is so far away. I guess 2 weeks isn't that far, but it is far enough to make me that much more uncomfortable, far enough to make me see red, far enough to make me a mess.

We sat down and saw Dr.C today, he always makes me so calm when I am around him, which I am beyond thankful for. We went over the procedure, he said that this surgery is of course going to be difficult, but not anything near the risks we took with her second surgery. That surgery was huge, still talked about, who would have thought? He said that coming out of this surgery we run the risk of her rejecting her own heart valve, in which we will have created another heart issue with the replacement of her own valve. But as we all know, you can not look at it that way. It is a very small chance, not unheard of it happening, just very rarely. With Lily, we always prepare ourselves for the worst. He also said, depending on how her heart does after we come off of bypass, we may have to have a pacemaker implanted. We are hoping that won't happen, but not written off. Good news...we may be getting rid of Lily's only medication after this surgery, just depending on the arrhythmia of her Mitral valve. *Lily's gradient is some what reliant on her beta blocker/mitral valve. Quick explanation here, her Mitral valve opens and closes to quickly not allowing her Left Atrium to fill completely before distributing the blood into her Left Ventricle. Thus causing the flow and pressure problems of the Aortic Valve.*

Still with me here through all the medical mumbo jumbo? Good, here we go. Lily's beta blocker slows her heart rate down, allowing the blood to fill the chamber before dropping into the next chamber, then being pushed up through the valve...**Whew** Alright...moving on

After we discussed this, Dr.C also started to ask me how she has been lately, if she has been acting any different. Now..here comes my anger and frustration that many of you were asking me about earlier. Well, I told him that she has been fine for the most part, she does seem to get winded these days while playing. He asked me if she has passed out, which that was thankfully a big fat no. Then he asked if she has been having any chest pain.....do you see where I am going with this? Some of you might not...for those of you who do, bare with me while I recap the others. **A few weeks ago, might not have even been that long ago, but not the point here, Lily was screaming, blood curdling, make your stomach drop and heart stop, scream. We couldn't get her to calm down, but no sooner did it start, she would calm down. When I asked her what was wrong she pointed to her chest and said, "Oww". This is Lily, my 22month old we are talking about here. I didn't say, "Lily does your chest hurt?" I said, "Lily what hurts? Show mama, tell me what hurts." In turn she points to her chest and says "OWW" So I call the office, at night, and I get the return phone call of one of the doctors who knows Lily's case so I was confident he would in turn tell me that this wasn't normal....but...to my surprise, he did not. I was told to give her Tylenol and Motrin and watch her over night, and if she didn't improve to give the office a call in the morning.** Well needless to say, that didn't settle well with me, but I talked with a doctor and he said it was most likely a growing pain and with her heart condition it wouldn't be causing her pain. Even with the nagging at the back of my mind, I agreed with him and stayed home.

So fast forward to today, Dr. C asked me if Lily has been having chest pains (as mentioned above) and I said, as a matter of fact she has been having them. I explained to him what had been happening, and he was not happy with all that I told him. He told me she should have been taken into the ER to have an echo done, and if it was to happen again before surgery to take her in without calling the office....

point of the matter................

Go with your gut instinct...I am kicking myself right now, beyond ticked off at myself right now. My instincts have never been off, when I have felt something is wrong, something has been wrong, why I didn't acknowledge that then, I have no idea. I think part of me was selfish, I didn't want to take her in, and them keep her through Christmas. Horrible to say out loud, but partially the truth. The other part of the truth it, Dr.D was partially right, her heart condition wouldn't be causing the chest pain, but just because he condition wouldn't be, doesn't mean there isn't something else there that would be.

So what did we all learn? You know your child better then anyone else...when you know something is wrong, don't rely on a doctor to tell you over the phone if something is wrong or not. You are the best judge...Now..I am repeating that to myself, while seeing red and spitting nails.

On we go, Lily's surgery can not take place until the 19th, unless a cadaver valve the size we need is found before then. They have smaller valves, but like Dr.C said, it would be pointless to put in a smaller valve (that would fit right now) when we would just out grow it and need another one sooner, rather then later. He said, if we get the larger one that we are wanting, then we can be looking at 4-5 years rather then the 3-5 he originally thought. He said we might be able to time these surgeries with growth spurts, which would be the best of the best. We would have less surgeries and reach our goal of an artificial valve being put in with less scar tissue. There are a lot of pro's to this surgery and the timing. There are still the con's but we have to try to over look them. This is the best surgery for her problem, a time consuming one, but best none the less.

So as of now, January 19th, at 6:30 am, we will be at St.Joe's for check in, surgery will start at 7:30, and we may expect her back up no sooner then 2pm. We go for pre-op testing on the 18th at 10:45am on the 18th, which just happens to be Austin man's birthday, poor guy, his sister surgery is taking precedence over his birthday, we will have to try to find special him time some where in all this madness and chaos. We have done it before, hopefully we can manage it again.

Thank you all for your love and support and prayers through all of this. We have needed it all. Your kind words go a long way when I am upset and down. If anything changes I of course will update, other wise things should be pretty quiet around here until then. Or should I say, as quiet as one can hope, the weeks leading up to surgery.

Love Hugs and Blessings
Jenna