Pacemaker Transmission – Fail :-(

Posted on August 4, 2012 by William 1 Comment

Some things change and some things remain the same… today something remains the same from last year to today…

We’re in the hospital again. 😥

Each month we send a pacemaker transmission to the University of Michigan for their review. This transmission contains all kinds of data about how the pacemaker is acting. Typically, within a couple days of sending the tranmission we get an email saying that everything looked fine. Yesterday the story was different however. Sarah received a call at work from a pacemaker specialist and was told that something was wrong with the pacemaker and we needed to come in. They provided very little information as to what was wrong. Sarah called me at my desk and within a few minutes I was on my way to pick up Evan from my parents house. I was reluctant to drive the 2 hours to Ann Arbor without a little more information. We have a cardiologist in Kalamazoo that’s capable of interrogating the pacemaker so I wondered if that would be enough. Knowing that if it were serious we would have to go to Ann Arbor we were questioning what we should do but without more information I wasn’t comfortable doing anything. When we sent in the transmission the day before it was a little strange, it took longer than normal, and some of the lights on the display were different for some reason. We did it while I was holding Evan in my arms instead of laying down on the counter like we normally do so I thought maybe that had something to do with it. I wanted to send another transmission just to be sure. After several phone calls a waiting we ended up at our cardiologist in Kalamazoo to have the pacemaker interrrogated.

Both my second transmission and the interrogation confirmed the first transmission, that there was indeed something wrong with the pacemakers function. Evan’s heart was only responding (beating) to the pacemaker occaisonally. For the most part Evan’s heart was beating at his underlying rate of 60 beats per minute (bpm), not the normal 110 bpm that his pacemaker is set for. They changed some settings on the pacemaker and were able to get his rate up to about 80 bpm consistently. The cardiologist then explained to us that they had increased the voltage as high as they can and it was still not enough, there’s likely something wrong with one of the leads attached to the heart. Either the lead itself is broken or there is a problem with the attachment of the lead to the heart. In either case Evan will need surgery to replace the lead. We were told that Mott Children’s Hospital would have a bed ready for us by the time we got here so we went home to pack.

We arrived at Mott Children’s Hospital at about 6:30pm and made our way to our new room. It was  a very long night as Mr. Evan had no interest in going to sleep. He was out of his element and not happy about it. He was extremely active however. In his hospital cirb he was moving all over the place, playing with his toys and throwing everything over the side. Sometime shortly after midnight Evan finally fell asleep…for an hour, when I was awoken by the nurse coming to get some vital signs. Nevermind that I had a different nurse grab some vitals before he fell asleep. 😕  But he went back to sleep without much problem.

 

 

 

The plan for now is to just hang out for the weekend. Evan’s heart is being monitored closely and on Monday the surgical team will look at the different options and make a recommendation. There are 2 options as I understand it.

1. Do nothing. Evan will be having the final stage of his surgical procedures (the Fontan) in the spring of next year. If the team feels that the pacemaker is doing a well enough job to make it until then they might suggest we just wait. This would certainly mean that we would monitor him more closely at home with more frequent pacemaker transmissions, watching for various signs that it’s not performing correctly (fatigue, sleeping more, bluer, etc), and probably checking his heart rate regularly. Having the surgery comes with risks just like any other surgery. He will need to be intubated again, more drugs, cutting open his chest again, infection, etc. This will also create additional scar tissue on the hear from where the leads are placed which they would like to avoid since the’ll be replacing his pacemaker during the next surgery anyway.
2. Schedule surgery and replace the lead(s). This would mean opening up his chest in two places, one where the pacemaker sits and also the lower portion of his existing incision in the middle of his chest. They would not need to open the whole thing.

I’m really on the fence as to which one I would prefer… we’ll see what the doctor’s say. On one hand having another surgery does carry a lot of risk but does it carry any more or less risk than a pacemaker that’s working a little flaky? That’s what they’ll need to answer for us on Monday. I’ll keep you all posted.

Here are a few pictures from the last week or so including some of us in a ‘big pool.’ It was Evan’s first time and although he was very hesitant at first he warmed up to it and had a good time.