So I got a call bright and early this morning. It was the nurse from the electrophysiologist's office.
By the way, I've never gotten a call from her before, which of course makes my heart drop.
She told me that Zachy's last phone transmission showed his leads all look great, but he is having several episodes of high rates. She said it's nothing life threatening..yet..and that he needs to be seen.
We already had an appointment set up for October 14, and we are just keeping that appointment.
I am praying it is an easy fix. However, one of the reasons we paced him when we did, was to avoid getting to the point of tachy rhythms. Tachy is much harder to correct than brady. The hope was that by getting the brady under control, it would be like a normal heart and he wouldn't ever get to the tachy point.
I don't know how they are going to correct it. Before they paced him the doc talked about having to control tachy rhythms with meds. I keep hoping maybe the can just set a high threshold. But that doesn't make sense to me. It is easy to zap a heart and make it beat, but how do you zap it to make it slow down? Of course, I'm not the doctor and it may very well be possible. We'll see.
Have I ever mentioned how much I hate CHD. I hate that any child has to suffer through any of this.
I wish the Lord would just reach down and heal my baby's heart. And at the same time, I know how incredibly selfish that is. My baby is here and alive, so many aren't that lucky.
I find it almost comical that this is happening now. This seems to be our pattern. Things will be quiet in our house for awhile, then Matthew and Zachy will be hit at the same time. In fact, when Zachy was paced, Matthew had surgery a week later. So it figures that we would be dealing with all we are with Matthew and things would pop up with Zachy!
Anyway, his appointment isn't until the 14TH and I am going to try hard to not think about it until then!!
Showing posts with label pacemaker. Show all posts
Showing posts with label pacemaker. Show all posts
Friday, September 18, 2009
Friday, April 3, 2009
Zachy's Heart
I have asked you, in the past, to pray for Zachy and his lack of endurance.
He saw the doctor last week, and I figure the least I can do is share with you what happened! How generous, I know.
A pacemaker works in a couple of ways. First, they set a threshold for minimum beats per minute. Zachy's is set at 80. So, anytime his heart rate drops below 80, the pacemaker strikes. Which, is essentially all the time.
The other way it works is by sensor. This is for activity. There is a crystal in the pacemaker, and basically, when it jiggles, it tells the pacemaker that the person is active and needs a higher pulse rate.
Before November, the crystal hadn't been activated. He was able to raise his own heart rate when he was active.
In November, they activated it. So, when it jiggled, it told his heart to beat at 120 beats per minute.
What the doctor expected to happen was that after the pacemaker got the beats up, his heart would take over and function like a normal heart and allow the heart rate to go down naturally.
On Monday, he saw his doctor.
They drew out the information from the pacer and a bar graph showed up. Different heart rates. 120 and 80 had high bars. The rest were basically non existent.
What was happening was his pacer would tell his heart to get up to 120 bpm, then as soon as he stopped moving, his rate would crash down to 80 bpm. There was no gradual decline. Just sharp drops.
Talk about tiring a person out!
Dr. Bush has now set it so that after the jiggling stops, his heart rate will decline slowly over ten minutes.
We are back in the wait and see how it all plays out stage. We are praying this will help tremendously.
When we stop and think about it, it totally amazes us. Nothing about his heart working is natural. They did turn the threshold down to 40 on Monday to see what happened and his heart dropped immediately. The doc still says he isn't pacemaker dependent, which only means that he won't die without being paced. But he is currently being paced nearly 100% of the time.
We are so thankful for technology, and the fact that our little boy is here with us.
~~~~~~~
Totally related to absolutely nothing...why in the world can't someone invent a universal power cord? I have pictures to upload for you, but cannot find the cord. I just used it, and now it has disappeared. I have a gazillion other cords, none of which fit. It seems so simple to me...one universal cord.
It would certainly make life easier!
He saw the doctor last week, and I figure the least I can do is share with you what happened! How generous, I know.
A pacemaker works in a couple of ways. First, they set a threshold for minimum beats per minute. Zachy's is set at 80. So, anytime his heart rate drops below 80, the pacemaker strikes. Which, is essentially all the time.
The other way it works is by sensor. This is for activity. There is a crystal in the pacemaker, and basically, when it jiggles, it tells the pacemaker that the person is active and needs a higher pulse rate.
Before November, the crystal hadn't been activated. He was able to raise his own heart rate when he was active.
In November, they activated it. So, when it jiggled, it told his heart to beat at 120 beats per minute.
What the doctor expected to happen was that after the pacemaker got the beats up, his heart would take over and function like a normal heart and allow the heart rate to go down naturally.
On Monday, he saw his doctor.
They drew out the information from the pacer and a bar graph showed up. Different heart rates. 120 and 80 had high bars. The rest were basically non existent.
What was happening was his pacer would tell his heart to get up to 120 bpm, then as soon as he stopped moving, his rate would crash down to 80 bpm. There was no gradual decline. Just sharp drops.
Talk about tiring a person out!
Dr. Bush has now set it so that after the jiggling stops, his heart rate will decline slowly over ten minutes.
We are back in the wait and see how it all plays out stage. We are praying this will help tremendously.
When we stop and think about it, it totally amazes us. Nothing about his heart working is natural. They did turn the threshold down to 40 on Monday to see what happened and his heart dropped immediately. The doc still says he isn't pacemaker dependent, which only means that he won't die without being paced. But he is currently being paced nearly 100% of the time.
We are so thankful for technology, and the fact that our little boy is here with us.
~~~~~~~
Totally related to absolutely nothing...why in the world can't someone invent a universal power cord? I have pictures to upload for you, but cannot find the cord. I just used it, and now it has disappeared. I have a gazillion other cords, none of which fit. It seems so simple to me...one universal cord.
It would certainly make life easier!
Wednesday, February 18, 2009
Crazy Busy
It's been hard to sit down long enough to write an entry. I'm not sure I'll get through this one either, but I'll try.
School has us very, very busy. We are starting some new things. Matthew and Dillon are participating in the Science Fair this year, so we've been brainstorming. My sister recommended growing bacteria, of course Dillon jumped on that idea. So he will be doing a bacterial experiment of some sort. And Matthew will be growing plants using different types of lights. I'm excited that they are getting this opportunity. I never participated in a science fair, and honestly don't ever remember our school holding one.
We are also taking a stab at lapbooking.
Lapbooking can be done by any learner-- from preschoolers to adults. With this educational method, you make mini-books covering details that you've studied. After making a variety of mini-books about a larger topic, all the books are put together in a large folder. The finished product is called a lapbook because it's large and covers your lap.
The completed lapbook will serve as a review tool as your children refer to it over and over again. And if you have to keep a homeschool portfolio to document learning each year, lapbooks can be a very impressive addition- from http://www.squidoo.com/lapbooking
I've been wanting to try this for years, but it always seemed like so much work. It is not at all. It's fun! I decided that we would learn about Disney World before our trip. So in addition to our regular schooling, we are doing a study of Disneyland (since it was the original). The kids are having a blast with it, and when we are done, I'll post pictures.
The Pathfinders hosted a valentine's banquet at church to help them raise money for Osh Kosh. They raised about $500, but it was an awful lot of work. Matthew told us that night that he was never going to be a pathfinder director because it was too much work. Poor kid!
Emily is doing better after her last med raise. I think, though, that it won't be too awful long before we have to go up again. I cannot believe that her birthday is right around the corner. March 3 will be here soon, and she'll be 2 years old. How did that happen? She has renewed our love for Sandra Boynton books, especially 'Blue Hat, Green Hat'. They have to be the best books ever written. We've also discovered that she is awfully cute in orange! Who wouldda thunk??
Our healthy living group at church is trucking along, and I'm down 9 pounds. It seems to be going soooo slow. It's frustrating. But with the support of the ladies at church, I'm not giving up!
And finally, please keep Zachy in your prayers. He is back to tiring out easily. I hate that. I assume it will be another adjustment to his pacemaker. I just wonder if it will be a life long thing, this tiredness. He is supposed to see his doctor in May, but I'm going to try to get the appointment in April instead since we will be gone most of May.
Phew! That was long, and it took me a very long time to write it. I had to read books and play a game of Candyland during the writing of this post. Thanks for hanging out with me for this long!
School has us very, very busy. We are starting some new things. Matthew and Dillon are participating in the Science Fair this year, so we've been brainstorming. My sister recommended growing bacteria, of course Dillon jumped on that idea. So he will be doing a bacterial experiment of some sort. And Matthew will be growing plants using different types of lights. I'm excited that they are getting this opportunity. I never participated in a science fair, and honestly don't ever remember our school holding one.
We are also taking a stab at lapbooking.
Lapbooking can be done by any learner-- from preschoolers to adults. With this educational method, you make mini-books covering details that you've studied. After making a variety of mini-books about a larger topic, all the books are put together in a large folder. The finished product is called a lapbook because it's large and covers your lap.
The completed lapbook will serve as a review tool as your children refer to it over and over again. And if you have to keep a homeschool portfolio to document learning each year, lapbooks can be a very impressive addition- from http://www.squidoo.com/lapbooking
I've been wanting to try this for years, but it always seemed like so much work. It is not at all. It's fun! I decided that we would learn about Disney World before our trip. So in addition to our regular schooling, we are doing a study of Disneyland (since it was the original). The kids are having a blast with it, and when we are done, I'll post pictures.
The Pathfinders hosted a valentine's banquet at church to help them raise money for Osh Kosh. They raised about $500, but it was an awful lot of work. Matthew told us that night that he was never going to be a pathfinder director because it was too much work. Poor kid!
Emily is doing better after her last med raise. I think, though, that it won't be too awful long before we have to go up again. I cannot believe that her birthday is right around the corner. March 3 will be here soon, and she'll be 2 years old. How did that happen? She has renewed our love for Sandra Boynton books, especially 'Blue Hat, Green Hat'. They have to be the best books ever written. We've also discovered that she is awfully cute in orange! Who wouldda thunk??
Our healthy living group at church is trucking along, and I'm down 9 pounds. It seems to be going soooo slow. It's frustrating. But with the support of the ladies at church, I'm not giving up!
And finally, please keep Zachy in your prayers. He is back to tiring out easily. I hate that. I assume it will be another adjustment to his pacemaker. I just wonder if it will be a life long thing, this tiredness. He is supposed to see his doctor in May, but I'm going to try to get the appointment in April instead since we will be gone most of May.
Phew! That was long, and it took me a very long time to write it. I had to read books and play a game of Candyland during the writing of this post. Thanks for hanging out with me for this long!
Friday, January 16, 2009
One year ago today..
My baby got his first pacemaker.
Our lives changed forever, and yet, not so much.
Zachy's still a normal 5 year old kid.
Sure, we have to be more careful about what he does, and he has a lifetime of surgeries to look forward to, but he is healthy, happy, and normal.
Whatever that is.
I hate that this is part of our lives, but oh so thankful that Zachy is ours and we get to keep him here with us.
I love that boy so much, and am thankful for all the medical advancements that have happened to allow him to live!
We are just so very thankful.
Our lives changed forever, and yet, not so much.
Zachy's still a normal 5 year old kid.
Sure, we have to be more careful about what he does, and he has a lifetime of surgeries to look forward to, but he is healthy, happy, and normal.
Whatever that is.
I hate that this is part of our lives, but oh so thankful that Zachy is ours and we get to keep him here with us.
I love that boy so much, and am thankful for all the medical advancements that have happened to allow him to live!
We are just so very thankful.
Sunday, November 9, 2008
Treadmill test
After adjusting the settings on Zachy's pacemaker, he got to do his first treadmill test. Isn't he so cute??
And let me just add, that as cheesy as it may seem, it makes me very proud that the men surrounding him are all in uniform.
And let me just add, that as cheesy as it may seem, it makes me very proud that the men surrounding him are all in uniform.
Wednesday, November 5, 2008
Update on Zachy
So today was Zachy's appointment.
When he was originally paced, they were happy because he was able to get his heart rate up on his own. And by that I mean while active his heart would raise to the proper level. So, his heart rate was very low, but when he got active, he was able to get it up on his own.
That isn't happening now. So, he was being active, and his hr wasn't going up very much, causing him to be tired.
The dr changed the settings on his pm to now include the higher rates. So now, when he gets active, his pacemaker will kick in and raise his hr to a higher level, where it needs to be to properly oxygenate him.
We are happy about this, because it was a simple fix. We hope. We still have to wait and see if this takes care of the problem. It is a bit troubling though, because a year ago he was able to do that on his own, now he isn't.
Time will tell what the future holds for Zachy. But right now his heart looks great and strong, just a bit lazy.
When he was originally paced, they were happy because he was able to get his heart rate up on his own. And by that I mean while active his heart would raise to the proper level. So, his heart rate was very low, but when he got active, he was able to get it up on his own.
That isn't happening now. So, he was being active, and his hr wasn't going up very much, causing him to be tired.
The dr changed the settings on his pm to now include the higher rates. So now, when he gets active, his pacemaker will kick in and raise his hr to a higher level, where it needs to be to properly oxygenate him.
We are happy about this, because it was a simple fix. We hope. We still have to wait and see if this takes care of the problem. It is a bit troubling though, because a year ago he was able to do that on his own, now he isn't.
Time will tell what the future holds for Zachy. But right now his heart looks great and strong, just a bit lazy.
Wednesday, October 22, 2008
Drowning
What a far cry from the last post, where I said I was full. I still am. I just feel like now I'm drowning under all the fullness.
Things are going well. I just have a lot to do, and it's ok. It's all good. But there is something that is weighing so very heavy on me. I had been telling Matt I feel like the weight of the world is on my shoulders, and I didn't know why. Just now, it hit me.
It's amazing how something can stress you out so much that you push it far down and pretend to not be worried about it. But it is still there, festering, weighing down like a ton of bricks.
What is worrying me, you may be asking.
Zachy.
All his telephone reports from his pacemaker have been great. But, in the last few weeks, he has gotten so very tired. He can no longer make it through a day without crashing. It's de ja vu, and quite frankly, it scares the life out of me.
His pulse is hanging in right at 80, so the pacemaker is working. Why could this be happening?
I'm scared. So very scared. Since being paced, they haven't measured his heart. They said it would take a while for it to go back to his normal size, but at the same time, they have never promised us that it would return back to normal. What if it hasn't? What if he is still in the early stages of heart failure? Why am I even going there? Everything will be great. He sees his doc the first week of November. But in the meantime, I'm scared. I'm so very, very scared. Something seems off. I'm praying for something like a growth spurt, but I don't know. Would that knock a 5 year old kid out, every. single. day.? He had been doing so well...what's happening??
Things are going well. I just have a lot to do, and it's ok. It's all good. But there is something that is weighing so very heavy on me. I had been telling Matt I feel like the weight of the world is on my shoulders, and I didn't know why. Just now, it hit me.
It's amazing how something can stress you out so much that you push it far down and pretend to not be worried about it. But it is still there, festering, weighing down like a ton of bricks.
What is worrying me, you may be asking.
Zachy.
All his telephone reports from his pacemaker have been great. But, in the last few weeks, he has gotten so very tired. He can no longer make it through a day without crashing. It's de ja vu, and quite frankly, it scares the life out of me.
His pulse is hanging in right at 80, so the pacemaker is working. Why could this be happening?
I'm scared. So very scared. Since being paced, they haven't measured his heart. They said it would take a while for it to go back to his normal size, but at the same time, they have never promised us that it would return back to normal. What if it hasn't? What if he is still in the early stages of heart failure? Why am I even going there? Everything will be great. He sees his doc the first week of November. But in the meantime, I'm scared. I'm so very, very scared. Something seems off. I'm praying for something like a growth spurt, but I don't know. Would that knock a 5 year old kid out, every. single. day.? He had been doing so well...what's happening??
Tuesday, August 26, 2008
Come back please, and comment!
Will the reader who searched for "post TAPVR repair & pacemakers." to get to my site please come back and post a comment? I can only assume that you too, are dealing with a TAPVR kiddo being paced. I would love to chat with you! Please come back! :-)
Tuesday, July 15, 2008
Technology amazes me
Awhile ago, I wrote about the results of Zachy's carelink.
It is absolutely amazing to me the things we are able to do in this day and age.
First, it is crazy to think that there is a gadget, embedded in his chest that is making his heart beat correctly.
And then, to be able to do these carelinks. We hook this machine up to the phone line, he puts a disc over the pacemaker, and all the information is drawn out and sent to the dr.
CRAZY!
The dr was talking about how they are working on biological pacemakers right now. He said in Zachy's lifetime, he thinks they will be able to implant a microchip into his heart, and it will work as the pacemaker. AND..it wouldn't have a battery to wear out, or lead wires to break. How cool that would be!
Yes, technology is definitely amazing!
It is absolutely amazing to me the things we are able to do in this day and age.
First, it is crazy to think that there is a gadget, embedded in his chest that is making his heart beat correctly.
And then, to be able to do these carelinks. We hook this machine up to the phone line, he puts a disc over the pacemaker, and all the information is drawn out and sent to the dr.
CRAZY!
The dr was talking about how they are working on biological pacemakers right now. He said in Zachy's lifetime, he thinks they will be able to implant a microchip into his heart, and it will work as the pacemaker. AND..it wouldn't have a battery to wear out, or lead wires to break. How cool that would be!
Yes, technology is definitely amazing!
Friday, July 4, 2008
12 years
I know on this day you would expect an entry about how Matt and I have been so happily married for 14 years. And it's true, we have. Wouldn't trade a minute of it, and I look forward to spending the rest of my life with my one true love.
BUT...we got news yesterday that seems to be more important!! Maybe not more important, but so very, very great!
Yesterday, we did a Carelink on Zachy. If you don't feel like clicking on that link, I'll just tell you what that is! It is the monitor that pulls the information from Zachy's pacemaker out, through the phone line, and sends it to the Doctor. Genius invention, I tell ya! Dr Bush emailed me yesterday to say things looked great, and that after adjusting the energies at his last appointment, Zachy's battery should last 8.5 years! That means he'll be TWELVE years old when it's time to change it!
I cannot even begin to tell you how this makes me feel. I want to cry every time I think of it. Tears of joy. When they originally put it in, it was showing it would only last 3 years. This is such great, great news.
My kids are the toughest kids I know. They are my heroes. It breaks my heart to think of all they've been through. The other night, Zachy finished his aspirin (another HOORAY!) and he said, "oh good, now can I go get this thing out?" It about killed me. But normally, it doesn't bother him at all, and he is such a strong little trooper.
So yeah, 14 years of wonderful marriage, and excellent news about Zachy. Makes for some great days!!
BUT...we got news yesterday that seems to be more important!! Maybe not more important, but so very, very great!
Yesterday, we did a Carelink on Zachy. If you don't feel like clicking on that link, I'll just tell you what that is! It is the monitor that pulls the information from Zachy's pacemaker out, through the phone line, and sends it to the Doctor. Genius invention, I tell ya! Dr Bush emailed me yesterday to say things looked great, and that after adjusting the energies at his last appointment, Zachy's battery should last 8.5 years! That means he'll be TWELVE years old when it's time to change it!
I cannot even begin to tell you how this makes me feel. I want to cry every time I think of it. Tears of joy. When they originally put it in, it was showing it would only last 3 years. This is such great, great news.
My kids are the toughest kids I know. They are my heroes. It breaks my heart to think of all they've been through. The other night, Zachy finished his aspirin (another HOORAY!) and he said, "oh good, now can I go get this thing out?" It about killed me. But normally, it doesn't bother him at all, and he is such a strong little trooper.
So yeah, 14 years of wonderful marriage, and excellent news about Zachy. Makes for some great days!!
Sunday, February 24, 2008
I have no idea what to title this post!
Zachary had an appointment with his electrophysiologist this past Wednesday. I meant to get on and post about it, but I woke up with mastitis Wednesday morning. By the time we got home my fever was climbing higher and higher. My whole body ached, even the joints in my toes ached. I was pretty miserable.
And trying to get into a doctor around here is really difficult. So, I started on some old antibiotics and hoped it wouldn't get worse.
By Thursday night my temp had climbed to 103 and I couldn't get it down. I also couldn't unplug the duct that was giving me all the problems. Matt said I needed to go to the ER, but there was no way I could drive there. I was so weak.
I tossed and turned all night and was just sweating through my jammies.
When I awoke, my temp was finally down. But I still hurt horribly. So I tried calling again for an appointment. I got the run around. Finally, I was given the number to OB triage, which is where the lactation consultant is. They told me to get to the ER.
I was able to leave all the kids with Matt in the afternoon, and finally get to the ER. They did an ultra sound and said the duct was NOT abcsessed, which is what I was afraid of because it wouldn't drain. That was great news. She started me on a stronger antibiotic with instructions to come back in 24 hours if I wasn't better.
After just one dose I was feeling so much better. I'm still sore, and my temp still goes to about 100 throughout the day, but there is improvement. YAY!
It was horrible and I wouldn't wish it on anyone.
So all of that to say that I didn't update about Zachy.
He's looking good. The pacemaker is working 95% of the time. Holy smokes that's alot. The doctor says he will lower the threshold at about 6 months in order to get the battery to last longer. How that will work is really too complicated to try to explain here, but it will actually be allowing one of his natural pacemakers to pick up some of the slack.
In a few weeks we get to use a machine that will send all the pacing info to the doctor over the phone. Zachy is super excited about this, and carried the machine around for days when it came in the mail.
Yesterday, was pathfinder and adventurer sabbath. Our kids all worked really hard and did such a great job. We were so proud of all of them. And when I say that, I'm not talkig about our 5 kids, but all the kids. We direct the club, so they're our kids!
Soon we will be moving onto planning VBS. Oh the fun never ends here!!
And trying to get into a doctor around here is really difficult. So, I started on some old antibiotics and hoped it wouldn't get worse.
By Thursday night my temp had climbed to 103 and I couldn't get it down. I also couldn't unplug the duct that was giving me all the problems. Matt said I needed to go to the ER, but there was no way I could drive there. I was so weak.
I tossed and turned all night and was just sweating through my jammies.
When I awoke, my temp was finally down. But I still hurt horribly. So I tried calling again for an appointment. I got the run around. Finally, I was given the number to OB triage, which is where the lactation consultant is. They told me to get to the ER.
I was able to leave all the kids with Matt in the afternoon, and finally get to the ER. They did an ultra sound and said the duct was NOT abcsessed, which is what I was afraid of because it wouldn't drain. That was great news. She started me on a stronger antibiotic with instructions to come back in 24 hours if I wasn't better.
After just one dose I was feeling so much better. I'm still sore, and my temp still goes to about 100 throughout the day, but there is improvement. YAY!
It was horrible and I wouldn't wish it on anyone.
So all of that to say that I didn't update about Zachy.
He's looking good. The pacemaker is working 95% of the time. Holy smokes that's alot. The doctor says he will lower the threshold at about 6 months in order to get the battery to last longer. How that will work is really too complicated to try to explain here, but it will actually be allowing one of his natural pacemakers to pick up some of the slack.
In a few weeks we get to use a machine that will send all the pacing info to the doctor over the phone. Zachy is super excited about this, and carried the machine around for days when it came in the mail.
Yesterday, was pathfinder and adventurer sabbath. Our kids all worked really hard and did such a great job. We were so proud of all of them. And when I say that, I'm not talkig about our 5 kids, but all the kids. We direct the club, so they're our kids!
Soon we will be moving onto planning VBS. Oh the fun never ends here!!
Sunday, January 27, 2008
Post op appointment
Matthew and Dillon are at a birthday party. Matt is watching Scooby Doo with Zachy and Collin, and Emmie is sitting here happily chewing on a lid. So, instead of doing some much needed cleaning, I'm stealing a few moments to talk about Zachy's appiontment on Friday.
It was all very interesting. His regular cardiologist saw us in the hall so he came in to talk to us about things. He asked if we'd seen any difference. I told him that I hadn't, other than not being able to see his pulse. He told me that this was totally normal, and that he would expect it to take up to six months to see an increase in energy. I explained to him that I was having such a hard time wrapping my head around things. I mean, I get that his heart is beating more efficiently, but it just seems like he would tire out just from it beating so much faster. He told me some specific things about the workings of the heart, and explained that Zach had been running on about 30% less blood flow than normal. And that now his heart is beating at an acceptable rate, where as before it was not. But he said that his body has been running on this decreased blood flow for so long that it would take awhile for it to figure out what was happening, and adjust it's energy levels and whatnot.
Then the pacemaker doc came in and talked with us about the pacemaker. Right now it is set to go if his rate drops below 80 bpm. Which is basically, all the time. In three weeks, we will see him again and he will lower this threshold. Our hearts have several of their own pacemakers. And his has been running on a back up pacemaker for a long time. He said he isn't going to totally prevent that, because that part of his heart has been working for so long that way. And if he did totally prevent it, we would be lucky to get the battery to last 3 years. For now, we are going to try to get the battery to last at least 5 years. But his heart is so slow, that we might not make 5 years. Talk about depressing! But that's the goal.
Friday, we received the machine that will transmit the pacemaker info via the phone line. Zachy was pretty excited about it. Of course, it will be quite awhile before we use it, because we'll be seeing the doctor routinely for several months.
He also told us that where the vein was narrowed, was where his pulmonary veins were initially connected, so that is why it was narrow.
And through all of this, we are thinking that Zachy has a nickel allergy. He has had several reactions to metal in the past. Where the metal was on the pulse ox is still a sore on his thumb.
Anyway, things look good. And things are more clear now. It's all so much to take in. I imagine over the course of the next appointments they will become even more clear.
I'm just really glad to have this behind us now. Zachy acts like he never even had surgery. Kids are so amazing, they bounce back so quickly.
It was all very interesting. His regular cardiologist saw us in the hall so he came in to talk to us about things. He asked if we'd seen any difference. I told him that I hadn't, other than not being able to see his pulse. He told me that this was totally normal, and that he would expect it to take up to six months to see an increase in energy. I explained to him that I was having such a hard time wrapping my head around things. I mean, I get that his heart is beating more efficiently, but it just seems like he would tire out just from it beating so much faster. He told me some specific things about the workings of the heart, and explained that Zach had been running on about 30% less blood flow than normal. And that now his heart is beating at an acceptable rate, where as before it was not. But he said that his body has been running on this decreased blood flow for so long that it would take awhile for it to figure out what was happening, and adjust it's energy levels and whatnot.
Then the pacemaker doc came in and talked with us about the pacemaker. Right now it is set to go if his rate drops below 80 bpm. Which is basically, all the time. In three weeks, we will see him again and he will lower this threshold. Our hearts have several of their own pacemakers. And his has been running on a back up pacemaker for a long time. He said he isn't going to totally prevent that, because that part of his heart has been working for so long that way. And if he did totally prevent it, we would be lucky to get the battery to last 3 years. For now, we are going to try to get the battery to last at least 5 years. But his heart is so slow, that we might not make 5 years. Talk about depressing! But that's the goal.
Friday, we received the machine that will transmit the pacemaker info via the phone line. Zachy was pretty excited about it. Of course, it will be quite awhile before we use it, because we'll be seeing the doctor routinely for several months.
He also told us that where the vein was narrowed, was where his pulmonary veins were initially connected, so that is why it was narrow.
And through all of this, we are thinking that Zachy has a nickel allergy. He has had several reactions to metal in the past. Where the metal was on the pulse ox is still a sore on his thumb.
Anyway, things look good. And things are more clear now. It's all so much to take in. I imagine over the course of the next appointments they will become even more clear.
I'm just really glad to have this behind us now. Zachy acts like he never even had surgery. Kids are so amazing, they bounce back so quickly.
Monday, January 21, 2008
Pictures
I'm happy to say that Zachy is doing great. I've also noticed that I can no longer see his pulse pulsing in his neck. It used to be that I could see it from several feet away. His heart must be working pretty efficiently. I did feel his pulse, and it was so wierd...I had a hard time finding it. And then, it was pretty fast. I didn't count it since I know it isn't below 80, but it just felt really wierd. HOORAY!!
Anyway, here are some pictures from the surgery.
Waiting to have vitals taken.
Here we are in the pre op area. It was actually in the cath lab, and we were the only ones there. As a result, they allowed all the boys and grandparents back with him to give hugs and kisses. It was nice. They also didn't change him out of his clothes and into a gown until he was on the bed and out.
He had just had versed and was starting to relax a little.
And now the versed has kicked in and he is really silly.
Waiting in the waiting room, for 8 long, long hours.
Matthew
Dillon
Collin with grandma and grandpa
Grandma
Emmie
Finally done and in his room.
Day after surgery
Collin helping entertain him.
On these pictures, you can see white marks amongst the green. The white is everytime the pacemaker strikes. He would go several minutes with no strikes, then several with them.
Incision is on the left pec.
Playing in the playroom on Thursday.
Picture Matthew drew for him, of him. The pacemaker is down below his heart.
Watching TV in a wagon. We had taken a ride around the ward, and he decided he needed to stay in the wagon.
Bandages covering the pressure marks on his back. They were very sore red marks across his upper back. It was what he complained about more than anything. I'm happy to say they are almost gone now. And I don't know why I don't have pictures of the marks. Other than the fact that he would scream anytime we got near his back.
Visits from everyone
And finally, he got to come home. His mood suddenly changed and he started singing songs.
Anyway, here are some pictures from the surgery.
Waiting to have vitals taken.
Here we are in the pre op area. It was actually in the cath lab, and we were the only ones there. As a result, they allowed all the boys and grandparents back with him to give hugs and kisses. It was nice. They also didn't change him out of his clothes and into a gown until he was on the bed and out.
He had just had versed and was starting to relax a little.
And now the versed has kicked in and he is really silly.
Waiting in the waiting room, for 8 long, long hours.
Matthew
Dillon
Collin with grandma and grandpa
Grandma
Emmie
Finally done and in his room.
Day after surgery
Collin helping entertain him.
On these pictures, you can see white marks amongst the green. The white is everytime the pacemaker strikes. He would go several minutes with no strikes, then several with them.
Incision is on the left pec.
Playing in the playroom on Thursday.
Picture Matthew drew for him, of him. The pacemaker is down below his heart.
Watching TV in a wagon. We had taken a ride around the ward, and he decided he needed to stay in the wagon.
Bandages covering the pressure marks on his back. They were very sore red marks across his upper back. It was what he complained about more than anything. I'm happy to say they are almost gone now. And I don't know why I don't have pictures of the marks. Other than the fact that he would scream anytime we got near his back.
Visits from everyone
And finally, he got to come home. His mood suddenly changed and he started singing songs.
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