10/27/08 - A Week To Recover

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.

Adam- http://www.facebook.com/profile.php?id=744236111&ref=name

Aimee- http://www.facebook.com/profile.php?id=788018776&ref=name

The Freemans :)


Kira said...

We're praying for Kayleigh! Come on Kayleigh, you're small but fierce - you can do it! All ahead full!

Unknown said...

Keep it up little Kayleigh! Adam and Aimee- keep in mind it's not a 20% chance that something can go wrong-- its an 80% chance that things will be just fine!

Keep your heads up..

Lindsey said...

Continuing to keep Kayleigh in my thoughts and prayers.

Anonymous said...

You must be going out of your minds over this! I pray you will be able to hold up to face these battles.

God help you too, Kayleigh Anne!

Anonymous said...

I've been praying for Kayleigh since Aimee's initial posts on BBC. My husband has asked why I follow this story of a little girl that lives so far from us and that I have no ties to - my response is that there is something incredible about being witness to a miracle. Kayleigh is a miracle. She is amazing and inspiring. She has changed more lives than you will ever know.

God bless you and your beautiful, sweet Kayleigh. I pray that God will lay his hands on Kayleigh as well as all of the skilled medical staff that will work together with God to heal Kayleigh's heart and lungs.

kristin0821 from bbc

Anonymous said...

Kayleigh is in my prayers for sure in CT!!!!

Crystal in Ct

Living With CES After Failed Tarlov Surgery said...

No doubt Kayleigh is a fighter, and with the strength she is recieving from all the prayers, she will be home with you in no time :)I have said it so many times that these little babies are the most amazing of any human, I am living proof of that, I was born 3 months early in 1963 and most people say I have a mind of my own that is so strong willed, that nobody can change it :). I am amazed daily of their fighting spirits.

On a side note, I did just get your onesies in the mail today, as I myself had a medical proceedure last week that kept me down a little longer then expected. But they are on the way :)

Adam and Aimee, you guys are amazing and so blessed with that little one you have there. I will pray for Kayleigh that she is home safe with you soon :)


GiGi said...

A great one of Kayleigh's prayer warriors sent me this:
“Where two or three are gathered in my name..I am in the midst of them…”

How Awesome is that! He is so going to be there!

Thank you Pat!

God give Kayleigh lots of rest so she can gather strength to get through her upcoming surgery and make her grow in your love and in size.Give the whole Freeman family calm so they can continue to do your will. AMEN

Anonymous said...

I am feeling really good about this surgery after your post tonight. I have been really stressed out over this, but I know that our god is an awesome god and he is gonna pull Kayleigh through this. She is a strongest little girl I know, and she is not gonna give up. She has come this far, and she is gonna go even farther. Thanks so much for being strong and reassuring us. I'm gonna go make me a facebook just to help get your story out to the world. Praying for Kayleigh,
Nikki Conway

The Duncan Clan said...

So, so glad to hear that she is getting stronger and feeling better. Your posts are so inspirational. The scripture you noted previously was absolutely beautiful. I talk about Kayleigh to people as if I personally know her! But, even to know Kayleigh only through her story, I feel truly honored and touched in so many ways. She is amazing. I have never seen a person (baby, child, or adult) that is so strong and such a fighter – she must get that from her parents. I know you have heard this before, but THANK YOU for sharing your story, for letting us take this journey with you, and for being such inspirations to us all. Our world is truly a better place for having people like you in it.

Continuously praying for Miss Kayleigh!

Anonymous said...

this family has gone through a lot and is very special also, it would be nice if you could add them to your "angels" section, they will be shutting off their sons respirator tomorow...


Adam said...

We would be honored to put Christopher on our angels list. God Bless their family! We will be thinking about them tonight.

Adam & Aimee

Elkins5 said...

I've been following your journey for quite some time now. I usually stay silent until there is something I believe in so strongly.....this time its your daughter! I have stayed silent for too long.

In June, our daughter was born 3 weeks early and in NICU for 8 days. I read your story and I am reminded of our own scare and blessing(s). I know Carly's journey was not nearly as long or intense as Kayleigh's but I do know some of the feelings you are experiencing and in reguards to the scary unknown I do not wish that on anyone! I also remember the friends and family and even those we never knew who prayed and supported us. It was the best medicine for Carly and the rest of us.

I just wanted to let you know that I am doing all I can to spread your story and give you as much prayers, faith and love that I can. I have emailed everyone I know and have linked your blog to mine and have added a little entry about your family. I am extremely nieve about GOD and prayer, but since my own experience with my daughter and the more I read about your faith in Him and the strength He gives you the more inspired I am to learn. Its not that I am not a believer its just I was not raised in a practicing manner.

We love you and love hearing our mommy tell us your story! Hurry home!
Shane, Gavin and Carly Elkins

On a side note, I noticed you have many of the same outfits and styles we had and would love to send to Kayleigh. Once Carly came home she grew much faster than expected and there are tons she never got to wear. Let me know! Also, my kids and daycare kids would like to send a little something for her scrapbook...how can we get it to you?
Susan Elkins

Anonymous said...

Like Gi gi said...Thank God for some more time to pray. You have no idea how much I get to tell your family's story at school because of the bracelet. I wear it religiously. (and every time I see it, I remember to say a little prayer for you all). People ask me about it ALL OF THE TIME! Well since I'm studying to be an RT,a lot of the things Kayleigh is going through we are learning about, so it gives me a good reason to mention her. I feel like a proud mama when I talk about her...lol.

Well I'm praying for a restful healing week, and good news at the beginning of next.

Kayleigh's Kentucky Prayer Warrior
Kelly Sheree

Anonymous said...

From "big" six old Kayleigh in VA (and her mom) lots and lots of prayers. When I pull up her page and my Kay sees your Kayleigh's tiny hand, she says "Look, Baby Kayleigh!"

Praying and praying and praying!!!!

Melina and Kayleigh Jeanne Denise, VA

Anonymous said...

Thoughts, prayers, love, faith and peace are all with you.......God Bless all of you!

Cathy in Nobelsville