Gavin's Heart (Part 3 of 3)

 

Apparently, they have a band new technology and now make what is termed a leadless pacemaker made by Abbot.  So rather than having a big matchbox type thing under your arm or on your chest that attaches to the wired pacemaker, they make this thing this is about half the size of your pinky finger that screws into the heart ventricle muscle from the front side.  This is actually a picture of it inside his heart after his surgery, but there was a bit of saga leading up to the surgery itself.  Gavin developed a bit of a fever while in the hospital for some reason and they wouldn't proceed until it was under control.  It was super touch and go (and if we had missed this window) we would have had to wait out the weekend again and be here several more days.  Thankfully, the morning of the surgery, his fever broke and they proceeded.

It was hard to have him go under again after just being through such a serious episode leading up to this, but we were confident it was the best path forward.  The surgery itself took a few hours and thankfully, because he is almost a grown man size at 6'2", they were able to feed it directly down through his carotid artery in his neck into the heart.  This was a bit easier than going through the femoral artery in his groin.  Here he is recovering from surgery.  It never really gets easier seeing your child this way, but the doctors said the surgery went well.  They did have a small concern that the "capture" wasn't performing optimally which means that the charge dispersed through the pacemaker was having to be at a slightly higher voltage than they would like.  They did consult with the Abbot rep and after a day or two, it drifted back into an acceptable range.

Most nights I slept in the room with Gavin overnight, but toward the end of our stay Tara was able to take over and take a night.  We still had Gage at home so we were constantly running back and forth between the hospital.  Here is Tara loving on Gavin as he gets closer to his last day here.

Here we are in our final free state and so thankful that we have a healthy son with us!  Behind us on the top floor in the corner is where we spent almost all of our time for the week.  Once again, I couldn't speak more highly of the hospital, its staff, and all of the care we received.  It truly is top notch, and we also thank his doctor, Dr. Johannes von Alvensleben.  One of the smartest and kindest doctors we have ever had...and always makes you feel like you are his only patient.  Truly exceptional!

Gavin also gets to carry around this card for the rest of his life and skip all metal detectors.  Moving forward, he will have quarterly check ins with the hospital and should have a battery life of somewhere between 16 to 18 years.  Unfortunately, at that point he may have to have a replacement, but who knows where technology will be by then!

Gavin's Heart (Part 2 of 3)

 

Over the course of the next few days, the doctor's tried to put together what had happened.  They didn't fully understand the circumstances that could have transpired to cause whatever he had experienced.  The working theory is that sometimes an aggressive nasal swab can trigger a vagal response (hits the vagus nerve that runs next to the nostrils and that can cause a response that can trigger someone to pass out).  However, there doesn't seem to have been any known experience for this triggering repeatedly over the course of 20-30 minutes.  However, they could see in the EKG scans that what was happening is that his atrium was beating normal, but as the signal was received into the "pacemaker" or AV node, nothing at all was being propagated to the lower ventricles in the heart to cause them to beat.  Technically, the diagnosis was a 3rd degree AV block.  They wanted to keep him for several days to observe him while we worked on a solution.  

I spent many nights sleeping next to his bed as he just rested and took in all of the medical monitoring that was taking place.  Occasionally his blood pressure would do some weird stuff, or his breathing, or his EKG.  

This became our familiar view night after night as we went through the diagnoses.

After a couple days, with Gavin being pretty stable, we started to talk with the doctors about the long-term plan.  They strongly recommended putting a pacemaker into Gavin because we could not entirely find the cause and guarantee it wouldn't happen again.  This seemed like a tough decision for Tara and I.  On one hand, we agreed that we couldn't risk this happening again when he was on a ski chair lift or driving down the road or something.  On the other hand, how does a 17-year-old need a pacemaker in their heart and what kind of impact would that have on the rest of his life??  After quite a bit of deliberation, and discussions with Gavin and the doctors about quality of life, we decided to go ahead to schedule the pacemaker surgery.

Gavin's Heart (Part 1 of 3)

This has to be one of the craziest and scariest things we have experienced as parents so far and comes with a long tale about it.  Gavin had been feeling a bit sick lately, but it was mostly like a common cold that seemed a bit stronger than usual.  While I was at work, Tara ran him over to one of the Little Clinics at King Soopers (which is something we typically do out of convenience, and they do a good job).  They had him up on the table and were taking a nasal swab and Gavin just collapsed straight off of the table on the floor unconscious.  Tara said that she and the nurse were totally caught off guard, but this young nurse shouted to the other attendant to call 911.  Tara called me and was mostly hysterical, but I caught something about Gavin's heart stopping and an ambulance.  I bolted down to my car, and I think I was probably driving about 45 seconds later to meet them at the hospital.  They were transporting him to the ER at our local Good Samaritan hospital but details of what had happened and his status were pretty slim at this point.  I think Tara and I were both pretty scared and trying to work through the "what if" scenarios.

After a fairly aggressive drive from downtown Denver, I actually beat the ambulance to the ER, and I just saw them pull up and I headed in.  I think the hardest part was waiting, as they wouldn't let me immediately go back.  After a few minutes, I think the triage nurse could tell I wasn't holding it together very well and was able to get me back into the room with him.  Tara still hadn't arrived yet, but as I came in, they were moving him from the ambulance gurney onto the ER bed.  This picture is basically what I arrived to.  It was tough to see, but he was awake and alert which was a major answer to our prayers.  Even writing about this quite a bit later still brings tears to my eyes thinking about seeing your 17-year-old with defibrillator patches stuck to their chest.   Its definitely a remind about how frail life is and how easy things can change.

Over the course of the next few minutes a whole host of emergency nurses, doctors,  and the cardiologist supporting the ER were assembled and trying to figure out what was going on.  This picture (though it is a bit hard to see) is the EKG printout showing him being officially asystole or essentially without a heartbeat.  What we pieced together through talking with the Firefighters/EMTs was that his heart was repeatedly stopping and starting again for periods of 10-20 seconds.  Obviously, with your heart not beating you have a serious problem.   

After he was generally stabilized, they walked through the next steps with us.  Tara thankfully had arrived by this time...though having lived through the whole experience firsthand was quite traumatic for her as well.  With Gavin being a minor still (under 18), they explained that he would have to be transported via a second ambulance ride down to Children's Hospital in Aurora to be evaluated and treated further.  This seemed hard, but Gavin has had two previously heart surgeries (two ablation procedures) done there and it is an amazing hospital.  I was able to ride in the ambulance for the 45-minute ride, and they received us into the pediatric cardiac ICU unit.  Both of his pediatric cardiologists also met us within the first hour of arriving and said they had evaluated his case and reviewed his surgeries to try to see if anything they had completed could have caused what he was experiencing.

He spent the first night in the cardiac ICU unit (which was tough) as there is a lot going on when you are under that care.  Constant evaluations, numerous ongoing tests, and a dedicated nurse who watches you through your room window from her desk 24-7.  It was great care, but a lot.  Thankfully by the second afternoon they were able to move him down to the main pediatric cardiology floor and out of the ICU.  You can see Gavin in the picture above that would become our home for almost the next week.