10/24/08 (3:15pm) Surgery Update - Prayers Needed Badly!!!
The day started off good and the photo above is us seeing Kayleigh off to surgery at around 6:30AM. The procedure took a long 3 hours and after 2 hours, we started to get really antsy. Our main Neonantologist came in to check on us and told us things went well with the surgery. Kayleigh did have one of her pressure spells when they first inserted the catheter, but she quickly recovered. The spell that I am talking about was just like when she as recovering from the last bowel surgery and they needed to put her on nitric oxide.
Well, we got the news that Kayleigh's pressures are REACTIVE and they would then do the surgery to CLOSE the hole in her heart instead of banding it because she is at a size large enough for them to close it. I guess they will go less than 2000 grams if necessary. So that is wonderful, but then we were quickly nailed with some not so great news. Her lungs have been through hell and back and she may have done a lot of irreversible damage. That means, when they do the surgery to close the hole in her heart (VSD), her lungs might not allow the pressure to come down anyways. We won't know that until the surgery happens. The interesting news is that we found out Kayleigh has another hole in her heart that will play the same role as releasing built up pressure to equal everything out, but we still won't know how well that works until we get the surgery done.
After we got that news, we were told the bedside nurse would call us back shortly for us to come back. Thirty minutes quickly turned in to an hour and then to two hours. We were flipping out in a panic as we knew something was just not right. We finally got someone to spill the beans, but Kayleigh had a bad reaction coming back from the surgery. They said the Heparin used to thin Kayleigh's blood for the procedure had a negative effect on Kayleigh. The insertion point to the catheter was not closing up and was bleeding profusely, then blood started to come out of areas it should not be coming out of, such as her mouth. They gave her something to reverse the effect and thank God it helped. I do not know what happened back there, but Kayleigh looked like she went through a war zone. She had several different IV's in, a blood transfusion going on for the lost blood and she had blood on every instrument around. She was really puffy and swollen, and her body was as white as a ghost.
When we were able to get back there, she was in a much better state than 30 minutes prior. She was already coming down on her vent settings and she was sleeping peacefully. This was not a scene that any parent should ever see. Since we had Allyson and Brandon with us and because of RSV season, we had to go back separately. I lost it when I got back there and Aimee is in really bad shape right now.
This is where we need your prayers the most. Aimee spoke with the Cardiologist when she was back with Kayleigh. He is fearful that Kayleigh's window of opportunity is running short to fix the VSD to control these high levels of pressure in her lungs. They want to do it early next week, meaning she won't have a whole lot of time to recover from this drastic event that took place today. The problem we are having is Kayleigh's response to surgery and the doctors are most fearful of that. She did fine with the ROP surgery, but was not great with the bowel surgery, and now worse with the catheter procedure. Today's procedure was supposed to be a minor procedure, but Kayleigh must not be doing to well with the anesthesia and the effects it has on her body. Maybe she would not react that way if the hole in her heart was closed, but then there is no way of telling until then.
This next surgery to close the hole in her heart is going to be intense. They will have to use a lot of anesthesia. Her heart will have be stopped and she will be placed on both a heart and lung bypass. The doctors are fearful she might not survive the surgery, but she would pass away if she doesn't have it either. This has been a really tough morning for us and we need your support and prayers more than ever. It is so hard to think that we were just days away of coming home, and now we are faced with this.
I can't begin to describe the pain and the fear that we are feeling right now. All we can do is trust in the Lord that He knows what He is doing. Please pray for Kayleigh and for the specialists that are working on her right now and will be working on her for the surgery. We are supposed to hear from the main cardiologist who is doing the surgery sometime this weekend, hopefully sooner than later.
I will update you the moment I hear something.
Please pray for us and God Bless everyone!!!
The Freemans :(