Cardiologist Follow-Up

We drove a couple hours to see Sam's cardiologist this week.  He had a great report.  His new device is literally reading that its battery life has 12 years on it!  We know this will change as the device paces him, gets interrogated and possibly even shocks him over time, but the general idea is - it will last a long long time.  His cardiologist, whom we adore, told us that it is likely the next time he has to have this ICD replaced, he will be big enough for it to move up to his shoulder (instead of being in his abdomen, as it is now).  Overall, the report was excellent.

Sam and Parker, the Travel Awareness Bear, got EKGs this week.

He is limited in his physical activity for a couple more weeks.  We were reminded that he still shouldn't do certain things, like sled on his belly and swing on his belly, which is mostly to prevent a break in one of the leads.  He will only need to interrogate the device at home once a month now and we will see the cardiologist again in four months.

He is still struggling with his identity right now - mostly that he can't play rough with the other kids or do some of the physical activities he truly desires to do (but, to be fair, it hasn't snowed yet...).  So, I am continuing to encourage him in his differences and allow
him to enjoy watching the other kids wrestle for now.

But he is gaining his beautiful attitude back and he enjoys life to the fullest.  We were at yet another doctor's office this week, waiting to be seen and decided to play a little game.  All these doctor's offices are making us giddy.  So, for those of you who are asking, "how's Sam?" see for yourself.

Back to Life

Today is the first day Sam has gone back to school since his surgery. He goes to a school two days a week and I homeschool him the other three days, so, to be fair, he really hasn't missed any school as I have been homeschooling him full time.  But when he woke up this morning, his belly was mysteriously hurting him and he began crying about not wanting to go to school.  When he finally shared his heart with me, I learned that he is worried about being different from the other kids. He wants to run with them at lunch time and be active like his friends.  

I suppose we will need to unpack his emotions a day at a time and certain issues will come up at odd intervals.  This morning, we prayed, we talked, I told him he is allowed to run again.  We had to talk about how he IS different from the other children, but that is okay.  We prayed some more and I told him he doesn't need to show anybody his belly if he doesn't want to (he has been showing a lot of people his scar).  He said, "But, Mom!  That's my favorite part of it all!"  

Oh, how far we have come from that sad little boy who was afraid of what people would think of him...

And, oh, what complicated emotions he has.  

But, oh, how blessed we are.  This child can communicate clearly what he is feeling, and I really appreciate that.  He is feeling all the appropriate emotions and then some...and, oh, how grateful I am he is here to feel anything at all.  

Well enough to pick out a tree with his brother and sister

Day by Day

We are continuing to get emails, letters, and phone calls from all of the people who adore our sweet Sam.  We are so appreciative of the outpouring of love we are receiving.  Please forgive me if I am unable to write thank you notes to everybody, but I am working on it.  

Sam awoke this morning and decided to frighten his sister.  He got quite dizzy afterwards, which we are going to attribute to the loud "BOO!" he shouted.  But he also complained about some abdominal discomfort, so he is back on Tylenol for the day.  

Otherwise, nothing new to report.  He is almost walking upright; just slightly hunched over at the shoulders now.  He's eating normally and his tummy troubles will probably go away now that he is off antibiotics.

Again, we appreciate the prayers.  Keep them up!!

This World

A dear friend wrote this to Sam tonight:







"Your beautiful body tells a story.  'In this world, you will have trouble, but do not be dismayed.  I have overcome the world.' (John 16:33)

Trust in His love and constant presence - He has not and will never forsake you - through thick and thin.  He will teach you the depths of His love for you - and for this broken world.  You are such a gift." 

-- AC

Our lives tell the story of our great Savior.  We are honored to walk this life to praise Him.  We are blessed to be a part of His plan, however painful and unfair it may seem.  

One thing is true, God loves us.  We can know His love through His word, this world,and through our brothers and sisters who also have confessed that Jesus is Lord.  

Back Home

We are grateful for all of the prayers and blessings our families and friends have poured out over us.  Sam has been getting endless cards and emails from people, which has brought a smile to his face.  We arrived back home last night and were blessed, yet again, with a meal from a sweet friend.  When we came home, we found that our Sunday School class has come to our home while we were away and cleaned, vacuumed, did laundry and left us a meal (which we are going to eat tonight). We really do cherish these earthly moments where Christ's love is poured out over each and every one of us.

Sam is checking out Parker, a Travel Awareness Bear 
who also has an ICD just like Sam.

Sam is healing well.  I believe we were all surprised by how painful his recovery has been.  He is almost walking completely upright now and he prefers to be up and about rather than confined to a chair.  This morning he is choosing to spend his time shooting a suction-cup gun at various targets around the house.  Back to his old shenanigans...

When we took his bandage off on Saturday morning, Sam was so sad to see his belly.  I took a photo of his reaction, but it is too personal to post publicly on the internet.  Needless to say, he has gone through stages of emotional reaction to the new wound and he is now at the point of acceptance.  He even proudly showed it off to a friend last night.

I will continue to update as I am able.  I think we have all been taken aback by the exhaustion every last one of us in our family has felt.  At any point throughout the day, any of us could lay down and take a nap.  However, we have renewed strength in the Lord and with the help of our friends, we know we will recover fully.

Thanksgiving Day

We are so grateful for the prayers that have been poured out over our son, Sam.  We know that the Lord chose to help Sam today through your prayers and we ask that they do not stop.  His recovery over the next couple of days needs to be covered in your prayers.

He did great throughout parts of the day.  As the day progressed and he had used his legs and body more, he grew more uncomfortable and unwilling.  By the end of the day, he just wanted to be carried everywhere or just lay down.  He did not eat much today, but at least he kick-started his body by ingesting some food. 

Items to pray for:

• Continued hydration
• Appetite
• Less pain and discomfort (he does not feel like he can stand straight now, so he is hunched over as he walks, IF he chooses to walk)
• Greater communication between us (he is having a hard time articulating anything about specific pain, though he does say he can feel a "crunching" sound in his abdomen, when he is in the greatest pain, he just grimaces and assumes we understand what that means)
• For peace in our family (Carolina had a freak accident tonight and we thought she may have broken two of her fingers.  After a trip to the ER and some X-rays, we learned it was just a very very bad bruise.  We are all on edge and we need to be at peace as we digest what is going on around us)
• For supernatural strength.  We are all exhausted right now.  All of us.

Thank you to everyone who has visited us, called us and sent cards.  Sam is such a beloved boy and we know God's hand is on him.  It is a blessing to be part of the family of God!

Thanksgiving Morning

Happy Thanksgiving!  

The Lord blessed Sam with an amazing night.  He declined medicine consistently from 9:30 last night until 6:20 this morning.  However, when he started feeling pain at 6:20, it went from mild to severe in no time flat.  He was so uncomfortable that he started vomiting again, which caused his belly to hurt and, of course, he lost the little liquids that he had ingested since he woke up.  

We will continue to keep medicine in him around the clock for the next couple of days.  

Our goal is to manage pain and get him walking today, as well as eating and drinking.  

Your cards are coming in and he is enjoying reading all of them, especially the varying snowflakes.

Hydration

It is critical that Sam is well hydrated during his recovery period, and in general, throughout his life.  An electrolyte imbalance can cause an arrhythmia for his heart, which is why we try to keep him hydrated all the time.

As of right now, he really has not had much to drink.  The little that he has had, he has vomited.  He is still in some discomfort (and at times, pain) as well.

So, please pray for him to be able to keep some liquid down and, maybe later tonight, food.  Pray also for his discomfort to be relieved quickly.

In Room

Sam is comfortable in his room now.  He was in pain off and on during the immediate hours following surgery, but it is much more manageable now that he is settled.  

He is happy to be watching TV and drinking juice and there is a rumor they will be bringing him a Nintendo DS (we don't know exactly what that is, but he is excited to learn).  

Just monitoring him and keeping him comfy for now.

We are grateful to our Lord for carrying our family through this and the days to come.  We know the peace we feel can only come from Him.

Post-Surgery Update

The EP (electro-physiology) cardiologist and surgeon just came and spoke with us.  They said getting Sam's device out took a lot longer and much more manipulation than they expected because he is a thin and muscular boy, but with patience and elbow grease, they accomplished their task.

They tested the new device by sending Sam into an arrhythmia and it worked perfectly.  The new device is thinner, but 4mm taller than the older one, so it fits a little better in his tiny body.  The settings are the same as the previous device, but this new one has a "monitoring" feature that will help us in the future.  It will shock him when he has a sustained arrhythmia over 207 beats per minute and will pace him below 50bpm.

Believe it or not, they said he can return to school on Monday!  I think we will save his teacher the fright and keep him out a little longer (a benefit of the homeschool/coop), but that is great news!  Things to look for:  severe abdominal pain, high fever, issues with the scar.  The scar is twice the size that they initially thought it would be, but there is no new scar - they were able to cut through the old one perfectly.  He is in recovery now and we should be able to see him soon.  He is staying overnight and hopefully he will not have any arrhythmias during that time, or afterwards.

I will continue to update as I know more.

God is good!

Surgery Update

My father and I ran into the anesthesiologist in the cafeteria and she said things were going very well.  Obviously, it is taking a little longer than they initially expected.

The official report is that the new device is tailored more towards Sam's needs, so it will not miscount or misunderstand his T-waves like the other one did on occasion (his heartbeat looks different on paper - it is backwards from a normal one, which caused problems with his original ICD).  Also, it is more tailored towards his body and won't stick out as much.  We don't know much about the other capabilities of this new device, but it is exciting to us to know how much technology has changed in the last six years.

He is still in surgery now.  We passed his surgical nurse on the way to the PICU waiting area and she said she was on her way to go check on him right now.

Again, we covet your prayers.

Just Back

Sam just went back for surgery.  It was different this time because he just walked back there fully alert.  In the past, they have given him something to make him a little loopy first, but he just walked back like it was no big deal.

They have blocked off four and a half hours for the surgery, but the surgeon feels like it will only be about half an hour.  They said this is an outpatient procedure and were talking about  having him out of here four hours post-surgery.  However, after praying about it and talking about it, extensively, Bill and I requested that he stay overnight.  In the past, his arrhythmia issues have occurred within 24 hours after anesthesia and we will feel more comfortable with him being monitored for that length of time.  Of course, we don't know how surgery will go at this point, but all of the doctors have been very supportive and said it is no problem for him to remain here to be monitored.

We are confident the Lord will carry him through this, as well as us.  We are getting emails and texts from all over the world from people who are praying for him!  While we cannot respond to every one of them, please know we hear your and are encouraged by your prayers.  Sam was at peace and we are at peace as well.

I will update more as I hear more.

Pre-Op

Sam had his pre-op appointment this morning.  Every single test came back normal, so he is good to go.

We will be at the hospital at 6:30am and the surgery will follow shortly afterwards.  The staff said he can even keep his old ICD to show everyone (make sure you ask him about it!).  As of right now, a decision for discharge is still open-ended.  

An X-ray of Sam's chest and abdomen.  Ah-mazing.  

Please continue to pray for the surgeons, doctors and staff who will be attending Sam, as well as our family.

We are at the Ronald McDonald House and are definitely at home here.  

A volunteer donated cupcakes to the RMH today.  Yum.

Upcoming Surgery

Sam is having surgery this Wednesday to replace his ICD.  There have been a lot of questions circulating, so I'd like to explain what I understand is happening.  Also, I will update here about his progress.

Sam had an internal defibrillator implanted just before he turned 11 months-old (see sidebar entitled Sam's  Story).  This defibrillator is a tiny little device that can fit in the palm of your hand.  If Sam's heart starts beating too quickly for too long, the device will shock his heart in order to "reset" it.  Sometimes that works on the first shock, sometimes it takes two or three.  

This device is actually placed in his belly, just behind his breast bone and towards the right side of his body.  The device has a battery which needs to be replaced every three to five years, and what this actually means is the entire device needs to be removed and a new one implanted.  

On Wednesday, November 27, Sam will undergo surgery to replace this device.  They will not touch his heart at all this time, but instead, they will cut through the breastbone a small amount, pull out the device, unplug it and plug in a new one.  The doctors will have to send his heart into an arrhythmia in order to test the integrity of the new device, which means, he will be shocked during surgery.  

Please post any questions here or on FB.  I will do my best to answer them or find the answers.

Sam's pre-op appointment is Tuesday at 10am, so we should know more then.

FB

Everyone talks about deactivating from Facebook, but very few people actually do it.  My husband told me recently that he read a study about some folks whose social media was removed from them for a 24-hour period.  Their reaction?  Fear.  We decided to do a study of our own and I deactivated my own FB account.  Did I experience fear?  Not hardly.  I did experience a wealth of other emotions that did surprise me, however.

One of the feelings I battled the most, at the beginning, was my overwhelming desire to tell everyone else they should also deactivate from FB.  I was so amazed by what I felt I wanted everyone else to feel it as well.  What I did feel was freedom, space, time, detachment, desire to fit in, curiosity, and more.

Many people will tell you you will be a better parent if you get off of social media.  I don't agree with that assessment.  Perhaps I am a rare breed (I know that already, in fact), but I really only used FB for a couple minutes here and there throughout the day.  Those minutes did add up, so when I took time off, I easily filled those minutes with other pressing matters.  My house is a little cleaner, my homework is a little more detailed, and, most importantly, my mind is focused on the Lord more.  Now THAT is what matters and I am happy to have the break.  Will I go back?  Yes, my plan is to reconnect during my two weeks off from school and then deactivate again when school starts back.  

In the meantime, our family is preparing for an upcoming surgery for Sam to replace his ICD, Carolina needs surgery to repair her eardrum and Hudson...well, he is another story for another day.  Social media can wait.

His Ways

Our lives are not our own. We know this because things happen every day that are out of our control - sickness, death, decisions made that are not ours...It is difficult to understand exactly HOW we are part of this world some days.  I see my friends who don't believe there is a God and I wonder how they can imagine this life without a Creator - without a God.  

My husband read me a quote last night that had my head reeling.  It is quite philosophical  but if you really think about it, it makes a lot of sense (it took me a minute to wrap my brain around it). It's called the "ontological argument for the existence of God."

Anselm of Canterbury (1033-1109AD) defined God as "that than which nothing greater can be conceived."  Wiki explains more, "He suggested that, if the greatest possible being exists in the mind, it must also exist in reality. If it only exists in the mind, a greater being is possible—one which exists in the mind and in reality."

Theopedia explains, "The argument is ingenious. It has the appearance of a linguistic trick, but it is a difficult task to say precisely what, if anything, is wrong with it. All forms of the argument make some association between three concepts: the concepts of God, of perfection, and of existence. Very roughly, they state that perfection is a part of the concept of God, and that perfection entails existence, and so that the concept of God entails God's existence."

Whether you agree or not, or even understand it, the Truth is:  there is a God.  The Most High God.  And He is our Creator.  He sacrificed His Son, Jesus, on a cross for us (sinners) so that we can have a right relationship with Him.  

As I work through all the daily activities in my life, from studying for my own school work, teaching my children, cooking my family's meals, planning children's activities at my church, cleaning my home, driving here and there and changing diapers (to name a few), I am reminded that God exists.  He not only exists, but He loves me.  And you.  

Update on Sam

We traveled to Greensboro today to see Sam's cardiologist (for a regular check-up). Despite all of the high fevers, sickness, borderline dehydration, etc, his heart rate never got above 180bpm, and even that was unsustained. The doctor used the word "stable" four times. He cleared Sam for certain sports, told him no big roller coasters, and to never jump out of a plane. 

His battery voltage was 6.6V today and has been 6.6V since our last visit six months ago. When it drops below 6V, we will schedule surgery to replace it. This will likely happen over the summer.

We are now using a secondary monitoring system, so if the voltage drops any time between now and our next appointment in six months, we will go back to see his doctor sooner and schedule the surgery as needed.