New Heart News

So, Kiley had another cardiology appointment this morning. Jason and I knew she had been getting more and more tired lately, which the echo confirmed. Since her mitral valve is not working properly the blood has been backing up into her Left Atrium. This has caused it to grow over time. 

Each echo the cardiologist has seen it getting slowly bigger and bigger. Thankfully we can wait until after our trip but she is planning on doing a procedure called Cardiac Catheterization. 

She also is bringing Kiley's case to her team of cardiologists to do a team approach and get other expert opinions on how to proceed with her case. It is not a cut and dry situation. Her desire is to wait until Kiley's heart is at adult size to fix her mitral valve, but that is what is causing the pressure change in the atrium. 

Please pray for wisdom as the doctors work together to do the right thing. When they do the procedure above, should her coarctation need to be expanded they can balloon it as they couldn't fix it completely. When they did the surgery before they couldn't fix it 100% because the section was too long. 

If her left atrium gets too big then it will start pushing blood back into the pulmonary veins and arteries and that would lead the blood into the lungs. This would cause her body to think she has pneumonia or asthma. 

Thank you for your prayers of wisdom. Also, pray for her because she didn't like this news. Thankful for God's plans and that He is in control. I love her doctor and appreciate her working to find the best plan for Kiley.

Blessings of the Heart

So each night we bless our children, each one by one.  We have since this summer and being challenged by our devotional at family camp (Camp Grow).  Last week while I was blessing our daughter Kiley, God laid it on my heart to start praying every night for healing of her heart.  Why not, our God is an amazing God and can do ANYTHING!  And when I mean ANYTHING, He could say tomorrow that her heart is healed.  I believe it with everything in me.  I also believe he can say no.  But, He has challenged me to just ask.  I think part of the challenge is from studying Revelation and the magnitude of importance the prayers of the saints are to Him.
So, each night I hold my hand over her heart and pray.  Pray for healing. Pray that every single problem with her heart will go away and that it will be fully healed.

Tonight, as I prayed over her heart, she looked up at me and said, "Mom, could you add in there that He would allow me to have kids.  I really want to have kids."  She knows, that as of now, the next surgery for her will be when she is an adult.  She also has been informed that as of now the medicine she would have to go on will not allow her to have kids.  As of now.  We know that medical advances came happen at anytime, but she knows.  She also knows that we have a God who cares about our wants and wants us to depend on Him to have them.

Felt like sharing this tonight.  May He be your comfort with whatever you are going through today.  Remember that we have a God who is in control of EVERYTHING.  He cares.  He knows. And He wants us to trust and depend on Him.

Recovery of Coarctation Repair Surgery

Day One

They told us when she went in that we would probably be in the ICU for about 4-7 days depending on how things went.  This picture to the left was her after the surgery.  She was pretty much out of it and on pain meds the first day.  The epidural cracked during surgery so they had to take that out and give it to her based on her pain.  The first night was a tough one as she kept waking up and feeling like she was going to throw up.

This is a picture of her the first night. This was taken right after one of her episodes.  The nurses were great in helping my husband and I.  Thankfully my husbands mom came and stayed with the other three kids at home the first night.  So we could both be there for her. 

Day Two

Wednesday was the surgery, Thursday was the day the therapy dogs came.  As you can tell she is still kind of out of it, but before she went in she was hoping to see the therapy dogs.  So, with the nurses help we got her in a chair for when they came around.  My sister, Kristyn, flew in from Texas (with the help of one of my neighbors, which I will be forever grateful).  She is a nurse, so it was great having her here.  Since she was able to get out of the bed, with help, they decided that we should try and get her to go to the bathroom on her own.  With the chest tube, this became quite difficult, but needed to get her out of there.   When the therapy dogs came around she was "excited", and by excited I mean woke up, to see them.  It was great because we needed her to start moving her arm, because she didn't want to and it was becoming stiff.  So we made her reach out to touch the dog. As you can tell in this picture she really just wants to use her good arm.  She was not too happy about trying the other.  I understand, but this program was a great help!  This was part of the Child Life program, which I will blog about another time and put the link on here.  It is a great program and without it I think it would take children longer to recover. 
 Kiley enjoyed having the siblings with her during her stay.  Later on that day she started sitting up more and watched a movie with her brother and sisters.  Here is a picture of them in the room enjoying time together.

 It was nice, but Kiley got use to watching a lot of TV.  It was helpful, because when she was watching the focus was on the TV, not on the pain.  So, night times were really hard.  Looking back I might of just turned on the TV to  help with the pain, but she did get some good sleep in between the pain and nausea.  But, that usually came at night when all had settled down. 




Day Three

They wanted to get her up and walking more, she had really only gotten out of bed to go to the bathroom, which like I said was hard enough because of the chest tube.  It was stuck in her chest through her side and if she moved when they took her to the bathroom it was tons of pain.  So on day three all the drainage had come out and they took the chest tube out.  After they did that she was a new woman!  They got her up and decided to go for a walk with her siblings to the activities room.  There was also an ice cream social for all the kids and musicians playing for them.  It was an incentive to get a move on.  So here is a picture of our nurse, Heather, walking Kiley down the hall.  I will post more pictures of the actual events in my Child Life post.   She walked all the way down to the play room and they had the Wii set up.  This was great because she and her twin played the drums on the Rock Band game and we made her try and use her hurt arm, but of course she mostly used her good one, but it was good to try it out.  It got a smile on her face. 

 That night she slept a lot better and we were told that she would go home the next day!  We had no idea she would recover so quickly.  We attribute it to all the prayers that people were praying for her all over the world, as well as, the determination herself to GET OUT OF THERE!  Our God was faithful in watching out for her, our verse for this whole experience is Ephesians 3:20-21 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen."




Day Four-Going Home

She enjoyed one last arts and crafts project from Child Life and then we got ready to go home. 

Repair of the Coarctation of the Aorta

THE DAY OF THE SURGERY

Kiley was packed and ready to go.  She had such a good attitude:

"If I can run again, then they can do whatever they want."

Aunt Kristyn flew into be with her.

Grandma drove to be with her.

                        GG and Papa came up to be with her.

 They gave her an award for BRAVERY!  Because she was definitely brave!

They brought us back into the surgical waiting area and we waited and waited and waited.  They brought books for us to read to her and we played with our camera taking funny pictures.        Then the anesthesiologist came in and explained things to us and the plan for the surgery. Then they took her back.  My mom has this beautiful picture of Kiley and nurse Natalie walking back hand-in-hand to the operating room and her talking the whole way.  We were so proud of her.  We know it was all the prayers of everyone all of the country, ones we didn't even know, that were lifting her up at that moment.  And then we waited in a family waiting area. It was set up just for us.  It was nice not having to wait with everyone else. We played Speed Scrabble to pass the time.  Then Nurse Natalie came and gave us an update halfway through the surgery that everything was ok.  Within two hours all was done and she was headed to post op.  We went up and were waiting and waiting to see her.  The hard part was they called my husband and I back and then a doctor came out and told us that coarctation was more closed that they had anticipated, but that they were able to do a good repair and she was doing good.  The hard thing was that the epidurial cracked during surgery and they had to take it out, but we didn't know that at first and it took them FOREVER to come back and get us and we could see all the nurses coming and going from  her room and so we thought something bad was happening, but they were just trying to get the tube out of her back.  This is our dear daughter after her surgery.  She did such a good job and we thank God abundantly for the sucess of it.  I will have to post later about her recovery, which was amazing in itself.  Praise God!