Lord, please keep making me

Make me empty

So I can be filled

'Cause I'm still holding

Onto my will

And I'm completed

When you are with me

Make me empty

'Til You are my one desire

'Til You are my one true love

'Til You are my breath, my everything

Lord, please keep making me

(Sidewalk Prophets)

We received our dates today, and this has been my prayer since... 

It is often a whirlwind, just as it was today. At around 2 this afternoon I got a call from Dr. Del Nido's office saying we need to be there next Friday. Sam will have an outpatient work up day on Friday June 6, cath Monday June 9, and if needed surgery will be on Wednesday June 11. As soon as I hung up with them I was making calls to make arrangements. After an hour and still no where to stay (no rooms available except king suites for $400-$600 a night) I put in a call to our one and only Boston friend, Amanda. She and her husband Chris live and work in Boston, living about 20-30 minutes away from the hospital. Not necessarily the easiest, most convenient option since we will have early appointments on Friday, but we have to have some where to stay. I am just so grateful to have them open their home to us like that. I keep thinking what would we do with out them? I seriously have no idea. We have always had last minute trips, but never had this much trouble finding a place to stay. We will figure out the rest of the trip as we go, especially not knowing how long we will be there. For now just Sam and I will be flying up. I know that Brian would love to be able to be with us, but it is much more practical for him to stay home at this point. We have our flight booked and will fly up Thursday June 5. If we find out after the cath that Sam will be having surgery, Brian will fly up on Tuesday and join us. But if all we do is a cath and come home, there is no need in spending all that extra money on plane tickets and possibly a place to stay. Brian has always left us at some point to come home and continue to work, but I have never done an entire trip by myself. I'm sure it will be tough, but I am also sure we will make it just fine. 

I already had a trip to Bowling Green planned for this evening. So I was trying to quickly get logistics for Boston worked out so I could carry on with my day. Sam kept asking who I was talking to and what I was doing. I have been nervous about telling him and worried he would be scared and anxious about the trip. I told him we were going to Boston next week so Dr. Marx and Dr. Del Nido could check on his heart. That he would have a work up day and then a cath, but really shouldn't have anything done that hurts. (On Friday he will have labs, but they usually use numbing cream first. This doesn't always make him any calmer when the time comes, but at least I know it doesn't actually hurt. And before his cath they with give him medicine through his gtube that will make him not have a care in the world ;)) After I explained all of this to him, he simply looked at me and said, "I don't know if the dr is going to say we have to stay a long time, but if we do you have to push me around in one of those cars I like, and we have to take all my movies." That was it... And once again I was humbled and thankful for God's amazing grace!

My mind has had a thousand thoughts run through it since the call this afternoon. So many emotions to experience. I have prayed to God for His will and not mine, His strength to cover my weakness, His peace to cover my fears. I need Him to keep making me until He is my everything. That is the only way I can do any of this, through God's grace, and as always it is more than sufficient. 

Thank you for your prayers. Please continue to lift us up this next week as we make preparations for our trip and enjoy these few days at home with our sweet boy. Yesterday he flew a kite for the first time, it was great! :)

We Believe...

Sam has a love for music, he always has. He loves to listen to music and he loves to sing. It is incredible how easily and quickly he learns the words to new songs, and how many songs he knows. He gets hooked on a certain couple of songs and that is all we can listen to until he finds a new one he loves. Sometimes they are fast and fun, sometimes praise and worship, but they are always encouraging and uplifting because we only listen to "Jesus music" as he calls it. I love the way that God always knows what you need and when you need it, and is faithful to deliver. Sam currently has two favorite songs. I will share some of the lyrics from both:

We Believe from the Newsboys

 

In this time of desperation when all we know is doubt and fear

There is only one foundation, we believe

In this broken generation when all is dark You help us see

There is only one salvation, we believe

We believe in God the father

We believe in Jesus Christ

We believe in the Holy Spirit and He's giving us new life

We believe in the crucifixion, we believe that He conquered death

We believe in the resurrection, and He's coming back again

 

 

Healer from Kari Jobe

 

You hold my very moment, You calm my raging seas

You walk with me through fire, and heal all my disease

I trust in You

I believe You're my healer, I believe You are all I need

I believe You're my portion, I believe You're more than enough for me

Jesus You're all I need

Nothing is impossible for You, You hold my world in Your hands

 

We have recently found out that we will soon be traveling back to Boston with Sam. We are waiting to hear from them for our scheduled dates. Hopefully he will only have to have a cath, but they will also go ahead and give us a surgery date in case they are not happy with the cath results. Since Sam's last surgery in November when we replaced his aortic valve and repaired his mitral valve he has not settled out as well as he should. His new aortic valve looks great, and his overall echo looks pretty unchanged. But Sam is still having symptoms just like before his last surgery and some are actually a little worse. He is still tired and fatigued all the time. This doesn't mean he doesn't play or run around, it just means he doesn't last very long when doing those things. It doesn't matter how much he sleeps, if he takes a nap or not (which he most often does), he is still worn out. His legs get tired and weak, he will fall down easily or need you to carry him. He also gets out of breath easily, this is a symptom that is worse now than it was before. After his surgery before we discharged, the cardiologist in Boston talked about his discharge echo and his mitral valve. Before the surgery it was pretty leaky and so he repaired it, now it is stenotic (narrowed) and causing some higher pressures. They said we would just watch it and possibly address it later in a cath if needed. We have followed up with our local cardio and tried to wait it out. At first we thought the symptoms were just because he needed to settle out from surgery and he was still recovering. As time passed it has become obvious that there was another cause for the symptoms. So our local cardio sent all of his latest testing to Boston for them to review. All I have been told so far is that they want us to come for a cath where they will try to balloon dilate the mitral valve. But this valve is so tricky, it has literally been worked on and repaired every time he has had surgery in Boston. We will not know for sure if he will have surgery until after they do the cath.

We have not told Sam about the trip yet, and won't until we know the dates for sure. So we haven't said anything about it at church or anything like that. We would appreciate nothing being said about it to him or in front of him. I just wanted to get the word out that we need your prayers. We are standing on the truths and promises from both of Sam's favorite songs. God is our only salvation and He is giving us new life. He is most definitely our healer and nothing is impossible for Him. Over the past few months God has done some things in my life that have taught me how to be more obedient and how He will bless that, how to be more specific and persistent with my prayers, and literally how nothing is impossible for Him. The situation I was in did not come out exactly how I had thought or originally hoped, He had a different solution. That is because His ways are higher than my ways. And in the end as I looked back, He did in fact answer every single prayer I had prayed and every request I had He answered. I don't know why He wanted me to go through what I did, but I know He has a purpose. For one thing I am going into this next trip with Sam with a renewed spirit about the power in prayer and His ability to do anything we ask. So I will ask you to start praying with us and for us. Pray for travel logistics and safety. Pray the cath intervention will be all he has to have done and it will be the solution for his symptoms. Pray for Sam's comfort, peace, and understanding, I know this will be an extremely hard trip for him. His last surgery was the first one that he was old enough to understand everything and has caused him to be anxious and upset about any type of medical stuff.
I will let you know when we have our dates and will keep you updated during our trip. We are so thankful for all of you that lift us up in prayer. We know the power it has and know that it is life changing for Sam.
For now we are enjoying the beautiful weather and spending time with our sweet boy. Here are some pics from our trip to the Louisville Zoo from the weekend. :)