Pacemaker

This is a photo of the actual pacemaker generator that was implanted into Gracie's abdomen in 2004. This might seem a little "creepy" to some that we have it. And, truth be told, I shuddered a bit when Gracie came out of the OR a couple of weeks ago and they said, "Here's her old pacer." (It has been cleaned/sterilized for those of you who are wondering...)

It's most definitely a surreal thing to hold in your hand the actual device that has literally been keeping your child's heart beating. But, in addition to surreal, it's absolutely wonderful to know that this little tiny device (a computer, essentially, that measures approx. 1.5"x2") did it's job so very well. I will keep it for her... someday she (or even Preston) might want to show it to friends!

Her new pacemaker is an adult size - slightly bigger, has even more capabilities (technology advanced within the last four years) and should last her at least twice as long. So, hopefully, her leads (the wires that go from the pacer to her heart) and the generator can be replaced at the same time in approximately 8+ years.

We had a little "drama" regarding her pacemaker while she was in the hospital. I didn't post about it when she came home... it's a little "topic" all in itself.

About two hours after she came out of the OR, she started having what appeared to be pauses (or skips) in her heart rate and it appeared that the pacemaker wasn't fully functioning. The representative, who was in the OR when the new device was implanted, quickly came back to the hospital and spent over an hour with us and the on-call cardiologist. The pacemaker settings were adjusted, the rep gave the doctor a short "education" on the new technology, helping us all understand that she wasn't actually heading toward heart failure and then spent some time with just John and me answering more of my questions about what had just happened. Really, it wasn't a "big deal" but, until we knew that, we were nervous. What was uncovered in the rest of our conversation was where we found the true drama.

On August 5th, Gracie was to have her pacemaker checked at the cardiologist's office. Upon our arrival, it was discovered that the office staff failed (for the second time in a row) to coordinate the appointment. It just so happened that there was a rep in the office from another company who was there to meet with another patient. It just so happened that the individual used to work for our Pacemaker company and that there was a computer available in the office that belongs to our company. (I am not naming the companies involved... there aren't many... and if you look at the picture of her pacemaker, you already know that company's name! There is a lot of hospital hoopla aka: politics going on in our area between these companies and our hospital group... so rather than trash in public forum, I will provide info about the "lesson" we learned and if anyone wants more info privately, I will happily share there.)

All that should have happened is a check of Gracie's pacemaker generator life... no changes should have been made to any of her settings. Additionally, any changes made must be ordered by the physician, approved and printed for the patient's chart. At that visit, we learned that Gracie's generator had a one to eight month generator life and just under a four month mean. In other words, depending on settings and her body's use of the remaining generator life, there would be an expected "just-under" fourth month life. Worst case scenario... a month. That was August 5th. Fast forward to August 28th - - surgery day and the rep from Gracie's company coming into her room and talking to us.

She said, "She was in back-up mode when she came into the OR..."
I said, "Really... are you certain?"
"Yes... I interrogated the device before she even went under anesthesia."
My concerned and confused reply, "Well, on August 5th she still had a one to eight month range. How was she already in back-up mode when no changes were made?"

She looked stunned and asked if I had been given the device. I gave it to her... and she "linked to it" (still a "live" device until the generator is completely out of juice... wild, eh?) and informed us that the amplitude setting had been changed on August 5th from 3.0V to 5.0V and that is what ran down the generator's life so quickly. Never in the history of her use of the pacemaker had her body required that setting to be above 3.25V. She printed it out for me and I held it... studying it... and I realized that something terribly frightening and inexcusable happened on August 5th. Had we waited any longer for the surgery (which was the initial intent of the cardiologist because we had a "little time" still), we would have ended up in the ER with Gracie showing signs of heart failure.

The individual from the "other company" had changed her settings... whether by accident or not is unknown. Regardless... it's inexcusable. What we learned from the rep the afternoon after surgery is that no one should be checking that device that isn't from the company who makes it. Period. Our doctor had okay'd the check by the other person... as had I... because everyone said it was fine to do... so who was I to think that it would be a problem. Additionally, it would have been the second time in three months that the office neglected to coordinate the appointment and I knew that it was imperative to check the remaining life.

I wasn't made aware of any changes to her settings and neither was Gracie's cardiologist. Come to find out that our hospital was (at the time of that appointment) in negotiations to contract with this other company exclusively... and that Gracie's device was the last implanted at our hospital from that company... and that nurses/docs had to fight to get it done as scheduled... it's all a bit suspicious. This was a terrible "education" to get, but one that I needed in order to protect my daughter. Needless to say, that mistake will not be made again and I have an appointment with the cardiologist's office to discuss the events further. I don't know what, if any, action can be taken, but I intend to continue making noise about it... not to be litigious, but to prevent this from happening again to someone else. We were very lucky - - the outcome was good... others might not be so lucky.