Ready to go! ✈️

We were discharged from the hospital yesterday afternoon. We came back and spent the night at Amanda's. We are leaving for home today, our flight leaves in a couple of hours. We are more than ready to see Brian and to be back home! Please pray for safe and easy travels for all of us today, Brian will be picking us up at airport in Nashville. 

No surgery!

Thankful for God's amazing grace!!! No surgery!!! We will start a new medicine and stay the night to monitor and make sure he tolerates it ok. All the drs and surgeon discussed his case in their morning meeting and were on the fence about him. They came to the decision to start this medicine and hope to wait it out at least a year or so before we possibly replace the valve. 

Sam has already had a shower this morning and is riding around in the car. We are going down stairs in a few minutes to get him some chips and a sprite :) We are humbled and grateful by your love and prayers! 

Long day and still going...

Sam has been such a trooper today. We had to be here at 9:30 this morning and they did not take him back for his cath until 2:30. That's a long time to sit and be good in a little waiting room without being able to eat or drink! But Sam handled it as well as could be expected. The dr that performed the cath spoke with me after and just went over the general findings and information learned from today. Our cardiologist stopped by and simply said they will discuss his case in their morning meeting so the surgeon can discuss it with them. We won't know anything about surgery or no surgery until sometime tomorrow.
Sam is still having to lay flat, but should be able to sit up with the next hour or so. This is always the hardest part for him. He is laying in the bed eating chips, drinking sprite, and watching Snow White. We are so thankful for each of you that have prayed and continue to pray for Sam and our family. I will update you when I know more tomorrow. We are going to try to get some sleep soon....after the blood draw and going for X-ray lol!!!

Thankful for friends, new and old

We have had a great weekend! Sam and I are both worn out, but it was well worth it getting to enjoy our down time before we start the hard part tomorrow. Yesterday we went to the beach. Sam wanted to swim so bad, but the water here is freezing. We waded out a little ways and that suited him. He played in the sand and collected sea shells. When we got back to the house he played outside with his new little friend, Myles, that lives next door to Amanda. He ended the night playing Lego batman and watching Frozen. This morning we went for a walk around Deer Island, he loved seeing all the boats out on the water. He took a good afternoon nap and played outside again with Myles. He even got a little boat ride with Myles and his dad. We walked to eat dinner and he got in bed early. We are truly blessed with amazing friends to stay with, and with the new friendships we have made while here this week. We have to be at the hospital at 9:30 in the morning. Hopefully they will be running on schedule, but you never know. I will update tomorrow when he is done with the cath. It will probably be a quick update and will not have anymore details until later that night or the next morning. After his cath Sam has to lay flat for 4-6 hours. That is always a tough time at the beginning especially due to just coming out of anesthesia and in general feeling grumpy. Please be patient for info as I will be managing all of that on my own. I know you understand that Sam is my first priority. 

We are thankful for the love, support, and prayers we are receiving and benefitting from! Here are some pics from the weekend :)

Hurry Up and Wait!

This is the perfect title for our day.... There is a room that is the pre-op hub. You start there and go out for each service then go back to pre op hub and wait until it's time to go to your next service or meet with the next doctor.  We did X-ray, labs, EKG, echo, met with cath dr, met with cardiologist Dr. Marx, and all of these with several breaks between waiting makes for a long and tiring day. Sam was grumpy this morning until he saw Dr. Marx, who he absolutely loves. He perked right up and was so happy to see him. We also visited some of our favorite nurses and nurse practitioners on the cardiac floor. Sam also loved seeing all of them and gave lots of hugs and kisses.
We got back to the house around 4 this evening. We have just been playing with batman Legos and watching movies. We plan on going to bed early tonight. It is suppose to be beautiful this weekend, and I am excited to enjoy the great weather. Sam has to be back at the hospital at 9:30 Monday morning for his cath. We will have to wait for the results and go from there.
Have a great weekend!

We made it!

We had a good flight to Boston. Sam was great, played some and slept some. My friend Amanda picked us up at the airport. We have already had a play date with her little 3 year old neighbor, Myles. Now Sam is playing cars and planes with Amanda's husband, Chris. He will obviously love staying here! We have ordered pizza and will get to bed early tonight. We have to be at the hospital at 7:30 in the morning for appointments. I will update when we know times for the cath on Monday. Thank you for praying...definitely made a difference in our day!!

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. :)