Saturday, May 26, 2012

Keeping Stable

The last couple days have been pretty busy. Michael will remain in the hospital through this weekend. They will keep him stable without changing any of his medications to keep him comfy. We spoke to Michaels doctors and feel confident about our next step. Michael is so strong. I have confidence in our surgeons and our cardiologist and his team of colleagues. Our next move will be into the Cath lab.This will be this next week either Tuesday or Wednesday. Because this is still a high risk procedure they will have the surgeons on standby and have the operating room available as well. 
The Cath lab is where they will go in through the artery near his groin and follow that up to his heart. This will be mostly diagnostic to see if the Cath Dr thinks ballooning his valve will be worth a try. This tears the current tissue open to allow heavier blood flow. If they decide to try this they will do it then. If not then they will back out and we will discuss surgery options. They will know right away if this is successful. If it is not then they will see too much blood flow and regurgitation between the atrium and ventrical. The surgeons will be on standby during this time so that if they balloon the valve and it doesn't start working as we need it to then he will be taken to the Operating room for his next open heart surgery. They have ordered the valve needed. If this valve is used we need to keep in mind that it's larger than the opening of his current valve. His opening is only 10cm and the smallest mechanical valve available is 15cm. What they describe is what I think of as an hour glass. They wouldn't be making it go in the opening but instead set it just above and try to adhere it to the tissue there. These mechanical valves are also prone to create blood clots so he will be put on strong blood thinners. Our cardiologist has been sure in letting us know that heart transplant is still on the table if things were ever to get to that point. I have faith in this next procedure that it will work for Michael for as long as we need it to. Even if it's only a few months. It will help him gain the weight he needs for a less risky valve repair. Any risk we can eliminate will be great. 
This little guy is amazing. 

He has been eating larger amounts by mouth so hopefully we can get his NG tube removed soon. Whatever he doesn't finish eating we put into a large syringe on a timed pump so that he still gets the full feed. The pump they use is on the top right of this picture. He's just over 9 lbs

I didn't know I was aloud to dress him until recently and the nurses love that I'm finally bringing in clothes for him. I was so nervous to work around the cords and monitors but they've assured me they love it and after a few times of having them help I'm able to do it myself. I have to stretch the one sleeve to fit over his IV but it's worth it to see this little guy looking so good. I had so many newborn clothes that I was afraid I wouldn't get to put him in but he still fits in them. 
His favorite toy right now is this Monkey. The monkeys cheeks light up red as it sings and he thinks it's great. He gets so sad when it stops.

He gets tired fast from playing so hard. I love bringing in his personal items to make it more like a crib at home. I'm getting tired of that sterile blue color. I love the brightness his things have.

He also loves his big sister. She is laying in the crib with him to play and he loves it. They have so much fun. Zoey loves to entertain him. She's such a great big sister. The best he could have. She is so wonderful.