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.