We spoke with the heart surgeon today and he wants to push the surgery off for a week to allow Kayleigh to get as much recovery time as possible. He is thinking Monday or Tuesday of next week. He wants Kayleigh to be 100%, just as she was before the cath procedure, so she will be able to handle such a tough and demanding surgery. He also said that even though we have a limited window of opportunity before the pulmonary pressures become fixed, we should be okay waiting a week. THANK GOD!!!
The doctor went over the procedure with us and it goes a little something like this. Once Kayleigh is under anesthesia, they will open her chest up and insert two tubes in her heart to hook up to the bypass machine. Once that is in place, they will stop the heart and take 45 minutes to let the body cool to freezing 16 degrees. He will then open the heart up, close the VSD hole shut, and then close the chest back. Once that is complete, he will raise the body temperature back to normal and restart the heart. If everything looks good, they will not put her on the ECMO which is a machine that works in place of the heart to give the heart a rest. She may need to go on this if her heart shows any signs of fatigue after the surgery. They also may leave her chest open in case they need to get back in there to do something. The first week, she will be considered very high risk and the sickest baby in the CVICU (Cardiovascular Intensive Care Unit). They are expecting her recovery time to be several weeks.
He told us our chances of something going wrong are 20%, which is much better than what I thought. Since Kayleigh is so small, they are not only worried about her heart and lungs, but her brain, liver and intestines since blood is the major source of keeping those things working well. If they aren't getting enough blood, then they are more than likely to fail. The Neonantologist was being blunt about Kayleigh's chances also, and he commented that if Kayleigh's lung pressure do not come down over time, her right ventricle of her heart will work extra hard to fight against the pressure and soon fail causing her to die. Only time will tell with what direction her little body is going to take us. It is going to be a rough week of recovery, but it is also going to be a rough month of making sure these pressures move in the right direction and the heart works normal again.
Kayleigh is moving in the right direction though. Her blood pressure is coming down. It is still high, but no where near what it has been. They are still not sure what has caused her blood pressure to rise, but thank goodness it is coming down. They are doing a CT scan to make sure there is nothing wrong with her head, causing her blood pressure to be up. She is still desatting a few times a day, but seemed to pick herself back up quicker than normal. She is on 35% oxygen and 4ppm on Nitric. They tried to take her off of the nitric all together, but after 15 minutes her sats dropped a bunch. She weighed in tonight at 1780 which it was at 1880 the other day, but most of that was excess fluid. Kayleigh's leg is looking much better too and starting to get some color in to it. They still have her heavily sedated and is starting to look like herself again.
We did find some interesting news about her situation in the cath lab the other day. When they gave her the heparin, which was used to thin her blood to prevent blood clots after the procedure, Kayleigh's VSD and Hypertension caused her to shunt blood over to the wrong side. The wrong side meant blood was being forced in to the lungs at a much higher pressure than normal causing it to overflow the lungs. She was bleeding out of her mouth and because of that, they told us she was in really bad shape. I took that as she almost died and they agreed if the excess oxygen they gave her to bring the resistance down, she would have. That little girl is a fighter and is not going to give up at any cost. Also, these doctors are unbelievably amazing and I give them so much credit for the work that they do. We are blessed to be at one of the best hospitals, (Levine Children's Hospital) in the South East.
Gi Gi said it perfect on the comment page about the surgery being postponed, she said "I am sooooo relieved that God is giving us more time to pray." That is so awesome!!
Everyone, please pray and pray and pray for Kayleigh and the medical staff who are doing everything they can to help Kayleigh pull through all of this. Tell your family, friends and churches to pray so God can hear us LOUD and CLEAR!!! I challenge every single one of you to pray one extra prayer for Kayleigh this week, so God will lay his hands on Kayleigh and show us how Powerful, Wonderful and Awesome He is. We are so incredibly thankful for those who offer to send Kayleigh a gift, but the perfect gift is prayer and that is ALL we ask for.
God Bless & Thank You!!!
P.S. Aimee and I (both) created a Facebook account, so go to our link below and add us as friends so we can continue to touch lives with Kayleigh's story.
The Freemans :)