Last night just after 6:00 pm they still hadn't finished working on Nick. The cardiologists called us in and told us that Nick had fibrillated 2 times in the time they had been working on him and that he had been having a lot of ventricular tachycardia. They felt very strongly that the best option would be to implant a cardioverter defibrilator. (the intercardiac device I mentioned in the previous blog). Apparently there is a way to do it without breaking open his chest, and so they did it. He was in surgery until 10:00pm but they wanted to do it while he was already under anesthesia and also because of the fibrillations he had had while they were in there-- they didn't want to risk waiting and Nick needing the machine. The device is located in his abdomen wall on the left side just above his waistline. He has a new scar there now to show off (about 3 or so inches long) and also a new scar under his left arm kind of up in the armpit about an inch long. (They needed to run one on the leads from up there.) Hopefully this is not something that he will have to use a lot. Hopefully this is just a safeguard and a safety net in case his little heart acts up too much.
We saw it work this morning. His heart rate was running pretty fast for a few minutes when the pacer jumped into action and slowed it down to a better rate. There is a lot of work involved in getting the device programmed for his body because as we all know children are excitable and feisty sometimes, and the difficulty lies in programming the device just right so that it doesn't shock him unnecessarily. His excitement could trick the device into thinking he is fibrillating when he is not. If he receives a shock unnecessarily it could be painful to him and so we are praying that they can program things to just the right point. Too little of voltage and it wont help, too much and it could be painful. We think that they have got a good idea of where things should be so far. They are very careful.The device should last about 4 years before needing to replace it or its battery.
Right now we are kind of taking things a few minutes at a time. His pain is pretty high and he is on morphine and motrin. They also have him on some routine post-surgery antibiotics, and have decided to change heart medicines. He is being AMAZING through all of this. You can tell for sure that he doesn't feel good and is pain-- he is breathing in grunts, not moving almost at all, has very little appetite, isn't talking, and cries out if he is moved at all. But through it all, he tries to give us a weak little half smiles and nod his answers to our questions. He is being REALLY tough about all the poking and prodding and bandages and wires and stuff all over him.... hardly even a whimper when they have to do things to him. It's very impressive.
It's possible that we could leave this afternoon if all seems well, but it's more likely that Josh and I will try to have them keep us another night. After they sent us home so soon when he had the open-heart surgery and we ended up back at the E.R. that night, we are a little gun-shy.
One cool thing I didn't mention-- the ICD has wireless capability and incredible recording features. So anytime it picks up an irregularity it will record it and store it for the cardiologists! Also, it has the ability to send transmissions to PCMC wirelessly, so that even if we don't know he has had something happen the machine does and will notify the doctors here. Nick will have a monitor that will be kept in his room at night and as long as he is within like 30ft of this monitor it will record any odd happenings. I think that is awesome.
Nick will have a few restrictions for a while.. he'll need to try to not roughhouse or be too excited especially in the next month while the device settles in.
He needs to try to avoid some electromagnetic fields like anti-theft columns they have at movie rental places and libraries (meaning he shouldn't linger near them. as long as he just walks normally through then it should be fine). At the airport he will have to notify security and provide them with his medical identification to show he has a ICD and they will not be able to run the wand over his heart more that once every 30 seconds. And many regular household items he will just need to keep at least 6 inches away from his device-- such as an electric mixer, hair dryer, plug-in shaver, electric or ultrasonic toothbrush, magnetic bracelet or clasps, sewing machines, back massagers, magnetic chair pads... etc...
Things like microwaves, blenders, toasters, washer or dryers,curling irons, cordless shavers, and electric blankets are low-risk.
This ICD isn't 100% and neither is medicine, but hopefully this is a better alternative to having nothing.
That's the latest, we'll let you know more as we do. LOVE YOU ALL!
We saw it work this morning. His heart rate was running pretty fast for a few minutes when the pacer jumped into action and slowed it down to a better rate. There is a lot of work involved in getting the device programmed for his body because as we all know children are excitable and feisty sometimes, and the difficulty lies in programming the device just right so that it doesn't shock him unnecessarily. His excitement could trick the device into thinking he is fibrillating when he is not. If he receives a shock unnecessarily it could be painful to him and so we are praying that they can program things to just the right point. Too little of voltage and it wont help, too much and it could be painful. We think that they have got a good idea of where things should be so far. They are very careful.The device should last about 4 years before needing to replace it or its battery.
Right now we are kind of taking things a few minutes at a time. His pain is pretty high and he is on morphine and motrin. They also have him on some routine post-surgery antibiotics, and have decided to change heart medicines. He is being AMAZING through all of this. You can tell for sure that he doesn't feel good and is pain-- he is breathing in grunts, not moving almost at all, has very little appetite, isn't talking, and cries out if he is moved at all. But through it all, he tries to give us a weak little half smiles and nod his answers to our questions. He is being REALLY tough about all the poking and prodding and bandages and wires and stuff all over him.... hardly even a whimper when they have to do things to him. It's very impressive.
It's possible that we could leave this afternoon if all seems well, but it's more likely that Josh and I will try to have them keep us another night. After they sent us home so soon when he had the open-heart surgery and we ended up back at the E.R. that night, we are a little gun-shy.
One cool thing I didn't mention-- the ICD has wireless capability and incredible recording features. So anytime it picks up an irregularity it will record it and store it for the cardiologists! Also, it has the ability to send transmissions to PCMC wirelessly, so that even if we don't know he has had something happen the machine does and will notify the doctors here. Nick will have a monitor that will be kept in his room at night and as long as he is within like 30ft of this monitor it will record any odd happenings. I think that is awesome.
Nick will have a few restrictions for a while.. he'll need to try to not roughhouse or be too excited especially in the next month while the device settles in.
He needs to try to avoid some electromagnetic fields like anti-theft columns they have at movie rental places and libraries (meaning he shouldn't linger near them. as long as he just walks normally through then it should be fine). At the airport he will have to notify security and provide them with his medical identification to show he has a ICD and they will not be able to run the wand over his heart more that once every 30 seconds. And many regular household items he will just need to keep at least 6 inches away from his device-- such as an electric mixer, hair dryer, plug-in shaver, electric or ultrasonic toothbrush, magnetic bracelet or clasps, sewing machines, back massagers, magnetic chair pads... etc...
Things like microwaves, blenders, toasters, washer or dryers,curling irons, cordless shavers, and electric blankets are low-risk.
This ICD isn't 100% and neither is medicine, but hopefully this is a better alternative to having nothing.
That's the latest, we'll let you know more as we do. LOVE YOU ALL!
1 comment:
Hello Jardine Family,
I found your blog and wanted to let you know about a local support group for CHD families. You can find out more about the group at www.IntermountainHealingHearts.org
My son Jacob was born in April with Transposition of the Great Arteries and had an Arterial Switch Operation at 5 days old. He is doing great now.
There are a number of families in our group with all different types of CHD's and levels of health, including angel babies.
We are here to support each other. Please let us know if you need anything!
Christina Davis
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