What a day

This day was quite a day. It is hard to believe that this morning we left our room with Kylie and now we come back and we don't have her. It is like its two completely different days. I am just stunned with how today went.
We started this morning at about 5:00am, with the alarm going off and us just spending sometime with Kylie. She is such a good sport that early in the morning, it is almost sickening how happy she is :-). She was laughing, singing, playing, and talking completely oblivious to what was in store for her in just a few short hours Ignorance, today, was definitely bliss for her. Finally, the time came, we said a prayer with her, bundled her up, shored up our courage and trotted her off to the hospital, where we would hand over our most valuable item to the doctors and nurses and pray to God that we get her back, at least, in the same condition that we handed her over in. I would love to say that we had the stiff upper lip and that we were completely confident that everything would go well, but I was never good at lieing.
So we get in, and take her back into the pre-op area where we get to meet our surgeon, Dr. Ohye. Can I just say (well I guess I can because this is my blog and I can write what I want to :-D), the man looks more like a rock star than a surgeon. I mean he has the pony tail, the soul patch (yes he has a soul patch), and the rock star glasses. I guess, though, that when you can do what he does with a baby's heart he can look however he wants. But we met Dr. Ohye again and the other doctors and we started our jam session. Remember how I was scared about how Kylie would be when she left us, either screaming and crying, or totally oblivious. Well, God answered that prayer for me and that answer came in the form of Versed (SP?), not for me, though, for Kylie. Though if some were offered not too sure I would have turned it down. They gave her some to help make the transition a little easier and, boy, did it ever. She thought everything was funny the lights, the doctors, us, everything. So with the signing of the consent and the shaking of hands we give our now, very stoned, child to the capable doctors and headed up to be with the rest of our family and friends with the promise of us being updated regularly.
Our first update came at about 10:30am, three hours after we handed her over. They were doing the repair on the leaky valve and hadn't even touched the FONTAINE PROCEDURE yet, and I thought I was a procrastinator. No, what had happened is that it took them a hour to get set-up, all the I.V.'s in, and make sure Kylie was ready and the next two hrs were spent getting through the scar tissue of the previous surgeries. Can I just say WOW? Well, I just did. With a promise to have another update in an hour we were left to wait again.
At 11:30am came our nurse with another update....THEY WERE DONE! Well that was anti-climatic :-). Once they got in it was easy to tear down the old wall and put in the new one. They also left a tiny hole, called a FENESTRATION, as kind of a pressure relief valve, when the time is right, a couple of years from now we will go in and close that off, throuh a heart cath. But the nurses and surgeon asked that we give them an hour to get Kylie settled and, then, we could see her. It was really kind of weird to have all this pent up anxiety and then have nothing to do with it. Just don't make any sort of comment that resembles "That's it" or you could get a slap upside the head, trust me I have the headache to prove it.
It was such breath of fresh air to see Kylie again. She was intubated, of course. She has an I.V. pole, a catheter, three chest tubes and a heavily bandage chest but my little girl was safe and back in my sight. They had plans to extubate her, either today or tomorrow and were talking about sending her to the general floor in a couple of days, which is awesome. The only problem we had was that we couldn't stay with her for too long because our voices would excite her and she would fight against the vent. So we had to leave, so we got some lunch, visited with family and grabbed dinner as well, there is a lot of eating while you are up here. After dinner we decided to head up to see Kylie before calling it a night. What we didn't know was that we were in for quite a surprise.
We got up to her bed to find out that she had been extubated. Not only was she extubated, but if they hadn't extubated her she would have done it herself. She had been fighting against and playing with the tube so much, that they just decided to take it out :-), that's my girl (if you don't do it I am going to do it myself.) She is now on a nasal cannula and seems to be doing great. The only real issues seems to be pain management, they want to keep her comfortable but not so sedated that she has trouble breathing and the bleeding in the chest tubes. The amount of drainage coming from the tubes don't really concern them, it's more the fact it is still mainly blood coming out of the tubes, which is increased more as she gets upset. They have given her one blood transfusion and clotting factors to help with clotting. So now we just have to wait and see. We can go to general floor with the chest tubes in, and with our history of kylis (sp) drainage, see first surgery, they are in no hurry to pull those tubes. In fact we will probably go home the day after the tubes are pulled.
So we wait and let her heal. The doctors are talking about a week and a half to two weeks, providing we don't have the drainage. If we have the extra drainage it could be as long as a month. So we leave it in God's hands, or at least we have the best intentions to do so. Thank God that He is such a patient God. Thank you for prayers and all your support. Good night.

We will add pictures in the A.M.