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 :)