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.

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. 

Shone's Complex

Our daughter went in for her 8th annual checkup,in April, and as with the previous year had some high blood pressure. The doctor the year before did not think much of it because there was a TON of different situations our family was going through at the time.

So, they checked the pulse in her femurs and could barely feel one. Therefore he sent us to a pediatric cardiologist. At that appointment they could not find a pulse in her legs and decided to do an echocardiogram. This revealed multiple problems with her heart:
Shone's Complex:
1) Parachute mitral valve (mitral valve stenosis)
2) Ventricular septal defect (hole in heart)
3) Bicuspid aortic valve/aortic insufficiency aortic valve
4) coarctation of Aorta
5) small left ventrical

Shone's Complex:

1) Parachute mitral valve (mitral valve stenosis)

2) Ventricular septal defect (hole in heart)

3) Bicuspid aortic valve/aortic insufficiency aortic valve

4) coarctation of Aorta

5) small left ventrical

From there we had to have MRI/MRA of heart and brain to make sure the details of what was going on.  At first they had told us that she needed Open Heart Surgery (OHS) and then after the MRI they decided to go a different route.  They decided to fix her Coarctation of the Aorta because it was almost completely closed, getting no blood to her legs and then see if the pressure change fixed the other problems. 

We decided to go with that.  The month of June was difficult considering if she got her heart rate up too much she could just drop dead (trying not to be too graphic, but honest).  We relied on the fact that our God had kept her safe these eight years without us even knowing she had the problem, He could keep her safe this rest of the way.

On July 6th, after gentic testing which ruled out Turner's Syndrome and Noonan's Syndrome, she went in to have her surgery.  She was such a trooper.  We went to two different doctors one at Lutheran General, Dr. Ilbawi and met with a team at Children's Memorial, Dr. Backer.  After lots and lots of prayer (by many people) we decided to go with Dr. Ilbawi, and could never be happier. 

Side note: Dr. Ilbawi is one of the most focused and humble doctors I have met.  He did not seek to platform himself, even we my husband and I asked him to compare himself with the other doctors.  He was gentle, but honest, as well informative.  He was patient with all of our questions and concerns and did not make us feel like we were dumb either.  His Cardiac Nurse Natalie Rudolph is amazing and a great support who will answer all the questions you need and, like Dr. Ilbawi, make you feel comfortable the whole way.  My daughter felt so comfortable with her that she walked to the operating room holding Natalie's hand.

Here is a picture of my daughter with Dr. Ilbawi, she never met him and to this day has not as he likes to focus on the procedure at hand.  Then once a year he has all the kids that he has performed surgery on for a family gathering with him. 

The next post I will post the day of her surgery for the repair of the coarctation.  This will not be her only surgery, but God knows all and knew this is all I could handle at this time.  It was enough.