That is the type progress Kayleigh is having right now. (Slow and Steady) She has come down from 20 to 5 on her nitric oxide and her oxygen is at 50%. Her blood pressure is still elevated, which is a major concern so they are going to keep working on bringing that number down. Her leg is looking better as it is not as dark purple as it was yesterday. Kayleigh is not as puffy/swollen as she was yesterday. They gave her some lasix and it has helped.
All that is great news, but Kayleigh is still heavily sedated because every time she wakes up, she desats really bad. Tonight, Kayleigh started to rustle around a little and dropped her sats to the lowest we have ever seen them. Her heart rate was around 70 beats per minute and her oxygen saturation was at 7 before she was bagged and her sats were brought up. It took a couple minutes to get them back up to normal. For those who have not experienced it, it a few minutes of holding your breath while watching and praying that the numbers start to go up. We feel bad sometimes because all we want to do is comfort her, but any kind of stimulation will cause her to spiral out of control. Last night was different because Aimee was able to hold her, but sometimes you have good days and bad days. I am just happy to see some progress today.
The surgery was scheduled for tomorrow, but it has been postponed. The surgeon came to Kayleigh's bedside to see her progress and she is in no way, shape, or form to be going into heart surgery tomorrow. They are flexible and will move her accordingly. We did speak with another doctor for a little while today and he is positive about the surgery, but knows that this will be Kayleigh's toughest challenge yet. We were told that Kayleigh could possibly be put on ECMO for a few days to give her heart a rest. An ECMO is a machine that works as the heart and lungs for Kayleigh. There will be tubes that draw blood by pumping it out of her body. The blood will divert through a machine that will clean and oxygenate the blood and then pump the blood back in to the body. Now how is that for technology!?!? This will give Kayleigh some more rest period through the first and critical week of recovery.
We did not meet with the heart surgeon today, but we will be meeting him tomorrow at 9:00 in the morning. We look forward to this meeting, not because we have a lot of questions, but for the sole purpose of hearing what he has to say about all this. The conversation will definitely strike up some more questions, but we are interested in hearing what his thoughts are about doing this in depth surgery on Kayleigh. We have complete faith in him, but the unknown is what is giving us the most stress. We want to know everything that is going on so we can try to relax. It is an interesting situation and I have been pondering it ever since I learned we were setting up a meeting with the heart surgeon. This guy who is about to work on my little girl is classified as one of the elite surgeons, right up there with brain surgeons. He has one of the most respected jobs in America or the world for that matter. His educational accomplishments are one of the best in the medical field and he has the knowledge and skills that God has blessed him with to save our sweet Kayleigh. I look forward to shaking his hand, not for the work he will do on my child, but for the work he has already done. He chose to use his God given intelligence to save lives. What an honorable man!
Aimee and I've been so wonderfully touched by generous people lately. We have been given a few gifts for Kayleigh, people are buying bracelets to support Kayleigh and one girl said she's going to talk to her principal at school to see if they can do something nice for Kayleigh as a whole. It just blows my mind how wonderful you all have been to us. I can't thank you enough for all the wonderful things you have done. I feel like God has tested our family and we are doing everything we can to pass that test by keeping our faith in Him, but I also feel like he has tested every single one of you. And you know what??? You ALL have passed that test in my book because of the support you have given Aimee and I. God calls us to love each other and to treat others the way we want to be treated, and every single one of you have done just that. We can't thank you enough!
You know, my whole purpose of blogging and sharing our story for everyone is to hopefully touch someone's life in a way that will change that person for the better. I am using my trials for the greatness of God. Some might call me a strong person, but I am not strong. I am actually at the weakest point of my life and only my faith in God is what keeps me strong. This verse explains it all too well.
2 Corinthians 12:9
“My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”
The Freemans :)