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. :)

 

 



Time for an update/Laundry time!

Sam is taking a nap and I am in the laundry room... Sorry for the lack of updates, but not any time because I stay busy keeping him entertained and also there isn't much to update. He is doing good, still has pain but is managing it well. Today has been his best day yet. He woke up very grumpy, had to do labs, but has been in a good mood since. We played in the playroom, rode in his car, and went downstairs to look around. We have only been watching for him to actually just feel better and get back to himself a little bit, and making minor adjustments to his medications as he improves. Feedings, diuretics, and blood pressure meds are what always need tweaking. I think we are finally at a good point, and as of now the plan is for us to discharge on Thursday!!! We are praying everything continues to go well and we can be on our way, but we have to be realistic and understanding if something happens and our discharged is pushed back for some reason. I will let you know if anything changes. Please pray for Sam for continued healing, for our discharge, and for safe and easy travels. I will be flying home with Sam by myself for the first time plus the fact he will only be one week post-op of surgery. So it will probably be a long, hard day for both of us...but we are so ready to be home!!  :) 

His birthday gift from child life specialist.

Riding the "dirt bike"

He wrote his name all by himself!

King Sam :)

4 years old...

My sweet boy is 4 years old today! We have been busy around here and really had not much for updates. As I type this he is asking for me to come sit with him. Brian flew home yesterday, so all my time is devoted to Sam. He has had a rough couple of days. He has never been this good this quick after surgery plus the fact that he is so much older this time, he is dealing with and feeling things he never has before. He is usually still in the icu and on serious medications this many days post-op. He is handling it all pretty well, but hasn't been doing much. We mostly lay or sit in the bed, and go for an occaional car ride around the halls. He had some good naps this morning and has had the best afternoon yet! His pain is getting a little better and a little more manageable, but it is definitely still there. He has enjoyed his birthday even though we are here and without all our friends and family. He got a cake from the nurses/np (the hospital provides one!), he has done FaceTime with several friends and his daddy today, our friends Amanda and Chris came to visit and brought Oreo cupcakes, and we have made lots of laps in the car. He has been sitting in his bed coloring and playing for the first time. He had a few bites of the icing on the cake, and that is the first thing he has eaten. So these are all baby steps, but steps in the right direction! Here are some pics :)

Thankful...

Today is Thanksgiving....and although we are not at home waiting to share a meal with our friends and family, we are thankful just the same. We are probably more aware of what we are truly thankful for on this cold day Boston. It is always wonderful to spend time with loved ones and eat way too much delicious food, but today I am thankful for much more important things. 

I am thankful for God's amazing grace and forgiveness that I do not deserve but He gives me everyday. 

I am thankful God chose me to be Sam's mommy.

I am thankful for my amazing best friend that is also my husband. 

I am thankful for the opportunity to be at Boston where Sam is recieving the best cardiac care available. 

I am thankful for all the friends and family and church families that have helped support us in any way and made this trip a possibility for us. 

I am thankful for familiar faces and friends here in Boston that make this trip so much more bearable....

Sam has had a good and quiet night. His numbers look great, and we will find out after rounds if it is a possibility to extubate later today. That will be the quickest we have ever done that if it happens today, and I cannot wait for my boy to wake up. In the icu I can only have my phone on when sitting in the back of the room, and I will spend most of the day by Sam's bed. So please be patience with us on updates and answering/returning texts, calls, and messages. We will be focused on what is most important right now. And I promise we will update with any big news or changes. I will leave you with a few pics. The first is how we spent the entire day yesterday, waiting. We shut the waiting room down. Then I will also post some pics of Sam post-op. If you are not comfortable seeing that, don't scroll down and look. I completely understand. But a lot of our followers are used to and like to see the pics so they can see the progress. He actually looks great :)

Back at the hotel :)

We are settled in our room back at the hotel. Sam is eating some Doritos and then going to take a nap. He did great last night! His neck was hurting him pretty bad, he had an iv in one side of his neck, and the other side had a bandage where they had used that vein in his neck for access during the cath. We gave him Tylenol around the clock and it did help some. When we saw Dr. Marx this morn he said even his older kids always said their neck really hurt when they would use that during the cath lab. Don't know if that made me feel better or worse, but at least I knew he wasn't just being whiny about something, it really was hurting! He had a good nap after we got up to the 8th floor yesterday, so it was probably 11:30 or midnight when he finally went to sleep. But after that he slept all night. 

Dr. Marx said they discussed him in their heart board meeting this morn, which is about 50 people consisting of drs and surgeons and all those involved in those teams, and they are all in agreement that this surgery is the best next step for Sam. So he is scheduled for surgery at 12:30 tomorrow. We have to be at the hospital at 11 am. I will update tomorrow to let you know they have started because I will be shocked if we start on time. Here are some pics...

His new book from his heart friend Georgiana ;)

Eating after the cath.

His new MU puzzle his nurse gave him for being good

 

Making his rounds waiting to be discharged today. 

833

We are settled in on 8 East. We are actually back in the first room that started our journey here, room 833. Sam has been asleep since we before we moved up here. The plan is for him to rest tonight, we will have to get an X-ray and blood work later. I am hoping he is a little happier when he wakes up because he can actually get up now. When he woke up after his cath he had to lay flat and he wasn't too happy about that. He also didn't like the iv in his hand, and hasn't figured out for sure about the one in his neck. He kept asking what was on his ear, and I told him it was an iv, but not sure if he understood. He just kept saying something about "those people" put all that stuff on him. :) He did really well and I am so proud of how he handles everything. When he had a question I would answer/explain, and most of the time he would say, ok. I can't wait until he wakes up and we can wipe him off, put some clothes on him, and change his bedding. There is Popsicle juice everywhere from earlier! We haven't talked to the surgeon yet, but we met with dr Marx after the cath and he thinks it is time to replace the valve. I will let you know when we have a definite answer from the surgeon and a time for surgery on Wednesday. Thank you for your prayers, they were felt all day long! 

Sam enjoying his Popsicle

Feels good to be "home"

We have had another long and tiring day, but Sam has been a trooper through it all. We started with a rough night. Sam kept waking up and crying, for some reason (not sure if it is the air or heat air unit or just something in the room) he has a runny nose and dry/scratchy throat. I kind of wake up with my throat hurting, but it gets better. Hard for him to handle that, plus that his nose is sore and running all the time now. We got him some Zyrtec, lotion tissues, saline, and a Vicks vapor rub plug in hoping it will help the situation.

We had to be at the hospital at 7am. We meet in a clinic room and they send us to different locations for testing throughout the day, always returning to the same clinic room. Sam did an EKG, vitals, met with np, blood work (first time EVER he didn't cry during blood work. They used numbing cream and he trusted us that it wouldn't hurt, that was awesome!!), met with a fellow, echo, and met with his cardiologist Dr. Marx. He says that we will have to wait and see what the cath shows Monday before we know for sure what we need to do in surgery and if we need to do surgery. It may even be Tuesday before we know anything because we know Dr. Del Nido has surgery Monday and may not get to look at Sam's case until that night. 

We also made a trip up to our old stomping ground 8 East to visit our nurse and np friends. They are definitely more like family to us, and it was obvious today that the feeling is mutual. They were all so happy to see him and couldn't believe how big he is and how good he looks! It is crazy to say but it makes you feel at home there, to see all those familiar loving faces gives you such peace. For a lot of his life this place has been our "home" and we are grateful to be back were everyone knows him and he knows everyone. Makes for a much easier trip considering the circumstances. 

Here are some pics of our day:

Lots of waiting today...

Getting an xray

Watching the awesome train!

Back at the hotel keeping busy.

We are here!

We have had a very long, but good day. We are all very tired...eating dinner now and then probably going to bed!! Sam was great today as usual. Here are some pics of our day. 

He had to do it all by himself!

Entertainment during our layover.

...a little ice cream...

He napped on the second flight, woke up grumpy, but they let him see the cockpit of the plane. He looks miserable in the pic, but is already talking about how awesome it was. :) 

Thank you for all the prayers...they carry us through!!

Leaning on the everlasting arms...

Yesterday morning while singing in the choir, we sang the song leaning on the everlasting arms. I have sang/heard that song so many times in my life I couldn't dare count, but this time there were words jumping off that song page into my heart. I am thankful for God speaking a word to me:

1. What have I to dread, what have I to fear,
   Leaning on the everlasting arms?
   I have blessed peace with my Lord so near, Leaning on the everlasting arms.
2. I had spoken with both cardiologists (local and boston) last week just with the news that our surgeon dr. Del nido had looked at Sam's case and thought if the medicine we had tried wasn't helping (which it was not making any difference) then we should come to boston for a cath and probable surgery. We were laying low with this news until we heard from scheduling with a date. It could have been weeks, but the turnaround has also been very quick in the past. So we began making what preparations we could with no exact date known. I got a call this morning, and we will leave for boston this Thursday. Sam has a clinic day on Friday, November 22; cath on Monday, November 25; and surgery date Wednesday, November 27. That is really all we know for now. We won't know 100 percent that he will have to have surgery or what they will do in the surgery until after the cath on Monday. The thougt is he needs his aortic valve replaced and they will use the Ross procedure to do this. 
3. We are asking for your prayers and as always could not make it through these times without all the love and support. I will update you all every step of the way! 
4. We are standing on God's word and his amazing everlasting arms!

Time for an update!

It has been a looong time since I have posted here. We basically use this blog to keep everyone updated on Sam medically...so it is actually a good thing to not have to post in such a long time! We have had a great year (our last trip to Boston was September 2012 for a cath) and have enjoyed our time happy, healthy, and at home. Sam graduated therapy at the end of summer, and started preschool the beginning of September! He loves it and is learning so much. We had a cardiology appt in August in Louisville just as a checkup. My complaint was how tired he was all the time, and I wasn't sure if it was just summer again getting to him (the heat always makes him more tired) or if it was something different this time. Dr. Wright said we could wait a little and see if things improved with the weather change and schedule a cardiac MRI for sam's fall break. This is just the symptom of a leaky valve which we know he has and have just been monitoring. It didn't take long after school started for me to know for sure this wasn't just tired from summer heat. It didn't matter how early he went to bed, how long of a nap he took each day, he was constantly tired. Not just sleepy, but a fatigue type tired. After speaking to dr wright we moved his sedated MRI and echo up to the end of sept. Dr. Wright has sent the results to Boston and we are waiting to hear from them any day now. It is possible they will want to do surgery to replace the bad valve.  Sam's school schedule is Monday through Thursday for two and a half hours in the morn. We dropped to three days a week and are currently only going two days a week. That has seemed to really help him for now. So for now we are anxiously waiting to hear from our team of drs in Boston. We would love for you to start lifting Sam up in prayer. Your prayers are what carry us through times like this! Will update you as soon as we know something from Boston :)

Here is a recent pic from our church hayride :)

Happy Birthday to my sweet boy!

Sam will turn 3 tomorrow...it is unbelievable to me. We are going to celebrate with a party tonight with all his little friends. It gives me so much joy to be able to that this year. This is always such an emotional time for me for so many reasons...this time three years ago was such a whirlwind and full of twists, turns, and every emotion you can imagine. I can close my eyes and in a second be right back in time. I can distinctly remember so many details and the feelings I was having as that moment was taking place. And yet so many things are such a blur. Sometimes I forget how much he weighed when he was born, but I can remember doses of meds he was on the first weeks of his life. Words cannot express how thankful I am.... one of my favorite things is when Sam will sit in my lap at church facing me (one of the only times he is still enough to do this), and he will play with my hair or kiss my face, or just lay his head on my shoulder. It brings me to tears almost every time. I always think about how blessed we are to have him, what amazing works God has done in his life and through his life, how humble and grateful I am that I still get the privilege to hold him and feel his arms around me when so many friends will never have that opportunity on earth again. I pray to God that I never have to experience that.
I know he is mine and I am partial, but I think he is such an amazing child, such a sweet spirit about him and such a contagious smile. He is so easy to love...and I am so thankful for all of you that love him, pray for him, support us, and help take care of him.
All I know to say when I think about Sam, is that God has been good. We have and always will give Him all the praise and glory.
Happy Birthday!!!

Enjoying Every Moment!

We are still giving God praise for the work he did in Sam! We are so thankful and not taking it for granted. We have been very busy spending time together and enjoying the fun of fall! We have also started back our usual routine which includes therapy three times a week. What have we been doing??...well, Sam and I spent a weekend in Lexington with my mom visiting my brother and nephew and also attending my cousin's baby shower. We spent the next weekend at Lovell's Orchard with Brian's mom. We had a visit from Brian's sister, Kelly, and my nieces, Molly and Sydney. We also added three cats to our family, two kittens and a mama kitty. Sam absolutely loves them! We went to see Sesame Street Live, and now Sam thinks Elmo is a personal friend and cries to see him almost every day :)
This weekend we were busy attending the Buddy Walk with our friend Eli, and later we enjoyed a bonfire and hayride with our church family. The chaos continues as we approach the holidays and birthdays, but I absolutely love it and wouldn't have it any other way! We are blessed more than we could ever imagine, and all I can say is, God is so good!!!
Here are some pics of all our activities, sorry they are in random order!