Scattershot - Latest Comments

Re: My child, the Cyborg (or living with #chd and getting a Pacemaker)

Mary — Sat, 21 Jan 2012 20:13:17 -0000

Thanks, I appreciate that :-) I don't think I would have stayed sane without our faith and our friends.
Our daughter is so thin that when her pacer is interrogated, it makes her have 5 hard "thumps". and it looks like she has hiccups. She usually feels queasy after that, but mints seem to help her :-)
I am SO glad you didn't have to find out through crisis! Still, I'm sure it hurts to find out your child has heart disease no matter how you find out. I'm just grateful we found out, b/c our cardiologist said she could have just not woken up one morning.(shudder!) As it was, between that January and June, I didn't sleep much. It was like having a newborn again- I checked her bpm every two hours. After we were home from having the PM implanted, after her sternum healed, I think the first time I slept through the night that year was in September!

Are you getting some sleep now? :-D

Re: My child, the Cyborg (or living with #chd and getting a Pacemaker)

joye — Fri, 20 Jan 2012 16:43:58 -0000

Yep. First open heart surgery at 3 days, pacemaker at 11. He had an incredible surgeon, and we are very thankful for his talents!

Ethan's is located in his abdomen since he's still a little guy, and he like to put his thumb behind it. When I told his cardiologist that, he told me he has patients that can flip theirs all the way over! Talk about wanting to puke.

Re: My child, the Cyborg (or living with #chd and getting a Pacemaker)

Jen Lepp — Fri, 20 Jan 2012 15:36:33 -0000

Yeah, we did the first Carelink and are due for our second tonight. I actually didn't think, and I don't think my kid thought, that he would feel anything at all when we did it, but he felt "something". Not bad, not good, but different. He could tell something was going on. It is better than the clinic, though. There's just something so alien about the whole thing.

Your story, though, is just horrifying - we did catch it before anything happened based on the recommendation of a peds doc that thought we should have his murmur checked out "just in case", but it just breaks my heart how many people found this out when in the throes of a crisis you didn't even know was coming. It was hard enough to deal with for me while he was squirmy McSquirmer baby but still relatively visibly healthy.

And then on type of that, the issues with the pacer. Oh, man. You have my admiration for managing to stay sane.

Re: My child, the Cyborg (or living with #chd and getting a Pacemaker)

Jen Lepp — Fri, 20 Jan 2012 15:27:15 -0000

Oh, woooow. 11 days old? I had no idea they could even put them in that young.

And no, I know the paranoia about the leads - I swear, every "I don't feel well" look that comes across his face totally freaks me out now. I'm having such a hard time explaining to him that he has to protect that area without scaring him.

The other night he came into the bedroom, and said "I can feel the Pacemaker!". This was said, of course, while he had hid fingers under the scar and he was pushing on it which, of course, made me go white and quickly snap "STOP pushing on it!". Is it probably that easy to dislodge? Well, no. But please, can we not tempt fate, child?

Fate kinda screws us enough occasionally all on its own.

Re: My child, the Cyborg (or living with #chd and getting a Pacemaker)

Mary — Fri, 20 Jan 2012 15:14:47 -0000

She was 8. We don't know when she came down with it- if it was from birth or what caused it later. (We live ina rural area, so some of the drs. are great, and some of the others abilities are questionable.) She kept coming out at night after bed saying she felt weird. One night in Jan.'10, she came out again and said it felt like butterflies were trying to fly our of a tornado in her chest. I took her pulse and it was 45 bpm. I told her to lie down, and called the pediatric advice line. While on the phone with them, I took her pulse while she was lying down, and it had gone down to 40 bpm, so we got a trip to the ER without speaking to the doc. They triaged her right away, put us in the room right across from the nurses station (which I have since learned has significant meaning in the ER!), and did an EKG. The tech. left the room and the dr. came in 30 sec. later (literally), and said, " Your daughter has a stage three heart block. We are transferring her to Stanford." So after I called my husband to tell him, and ran home to get a few things, we found ourselves in an ambulance for a three hour ride. My other three kids were asleep the whole time. She didn't have a PM put in right away, b/c her heart was unusually strong, but went back every two months (and went back to the ER multiple times) for 6 mths. She was scheduled for surgery the end of the summer, but her symptoms got worse, so we got a call saying, "We conferred all together, and decided she needs it now. Can you be here tomorrow?", and she had her surgery in June. There were complications- first they could only put one lead in, and it was pacing her diaphragm, so she was having giant "hiccups" that shook her hospital bed. Then 6 hrs. later, they thought the lead had detached, and it was confirmed by x-ray. After they had her back in surgery to re-attach it, they turned on the fluoroscope, and discovered that the lead didn't detach, it pierced her heart and her diaphragm, and was working its way out of her chest wall, so she was rushed into emergency open-heart surgery, and our overnight stay lasted 5 days. We missed our youngest daughter's 3rd birthday, and my 14 mth. old wouldn't have anything to do with me when we got home. We go back to the children's hosp. 3 hrs. away every 6 mths., and use the Carelink in the alternating six months. The first time we used the Carelink, it made me queasy. I still hate it when they interrogate her pacer at the clinic. Our next appt.is in Feb.

Re: My child, the Cyborg (or living with #chd and getting a Pacemaker)

joye — Thu, 19 Jan 2012 15:36:24 -0000

Mama of a pacemaker-dependent 2.5 year old here! Ethan will be 3 in March and got his pacemaker at 11 days old. We just had THE TALK with his cardiologist/EP about what activities he shouldn't participate in. Not fun, but I guess it would be even less fun if something were to happen to those leads!

Feel free to follow along ... http://joyemullis.blogspot.com

Re: My child, the Cyborg (or living with #chd and getting a Pacemaker)

Jen Lepp — Sat, 14 Jan 2012 19:04:22 -0000

Wow - how old was she when they diagnosed? We were diagnosed "late", too, but he was 1.5 years. I've got a friend who was 50 before they diagnosed him, and his family mentioned "Oh, yeah, we knew about it, we didn't think it was that big of a deal. Forgot to tell you." after he wound up having OHS to replace his valve.

I have a Medtronic Carelink monitor, but I haven't logged in to the system yet - we were back so often after the surgery, pacing just checked it there. We "called the mothership" for the first time last month.

Re: My child, the Cyborg (or living with #chd and getting a Pacemaker)

Mary — Fri, 13 Jan 2012 18:29:18 -0000

I can totally relate to the horror of watching a machine run your child's heart. My eldest daughter has had a PM since June of 2010. Sat. is our 3 yr. anniversary of suddenly finding out that she was a CHDer. It is hard to watch your child go through multiple medical procedures, and then even harder to realize this is their (and your) new reality. Do you have a Carelink for him?

Re: Buy a Twitter Zombie Posse, Get @Klout

laurencubed — Fri, 13 Jan 2012 00:17:33 -0000

Loved this post. I am writing a follow up post, and tagging this one in it, that is a follow up to this. Thanks!

Re: Buying, selling, and valuing Twitter followers

Bmaryott — Thu, 12 Jan 2012 12:16:46 -0000

It's odd to me that they don't have the accounts follow each other - The next step in the algorythm IS to factor in how many follow your followers, and number of recent tweets but them...

Re: Buy a Twitter Zombie Posse, Get @Klout

Jen Lepp — Thu, 12 Jan 2012 12:08:06 -0000

Yeah, I used to do that, too - I think I may stop that. :)

Re: Buy a Twitter Zombie Posse, Get @Klout

Bmaryott — Thu, 12 Jan 2012 12:06:54 -0000

I actually block and mark as spam any of the zombies that follow me on Twitter (not that I use it).

It's a weird world.

Re: 2011 Wrap Up: What I learned about #CHD (and how to get world class surgeons to take your case)

Jen Lepp — Sat, 31 Dec 2011 13:54:08 -0000

Thanks. Hopefully it helps someone - I know when I thought about knocking on Texas Children's Hospital's door, I was intimidated as heck by the process and had to fight through that "Shouldn't I just trust them?" thing.

Sometimes, unfortunately, the answer is "Um - no.".

Re: 2011 Wrap Up: What I learned about #CHD (and how to get world class surgeons to take your case)

Kristine McCormick — Fri, 30 Dec 2011 19:30:49 -0000

Great post Jen. I'm sorry you went through all of this, but am glad you shared it.

Re: PR Funnies of the Day

d tau — Wed, 28 Dec 2011 23:57:57 -0000

This reminds me of The Bloggess and her Demonstration of Relevancy! (such a good read)

Original post here - http://thebloggess.com/2011/10...

Wil Wheaton wrote about it here - http://wilwheaton.typepad.com/...

It was picked up by newsy blogs and PR blogs - http://www.prweekus.com/brandl...

And, of course, it EXPLODED all over Twitter. Martinez's twitter account was deleted after he made his own terribly insensitive tweets in the midst of the furor.

Re: PR Funnies of the Day

Jen Lepp — Wed, 28 Dec 2011 20:23:41 -0000

The link didn't come through - can you email it to me? I can't believe I didn't catch that misspelling - teach me to believe Consumerist commentors. :P

Re: PR Funnies of the Day

Teal_Cuttlefish — Wed, 28 Dec 2011 20:13:00 -0000

You don't have to post this comment, but it appears @oceanstretagy was a troll account. Paul's actual account was @oceanstratagy for a while, but he changed it again. Here is more information on this fiasco than you could possibly need, and the writer is continually updating.

Re: The Hunger Games

Jen Lepp — Wed, 28 Dec 2011 14:19:13 -0000

I loved Cinna's character - for some reason, the guy in the movie didn't match what was in my head, but otoh, his voice seemed so "Cinna".

Re: The Hunger Games

Jen Lepp — Wed, 28 Dec 2011 14:17:55 -0000

Yeah, the ending felt like the author raced to the end and rushed through the wrap up, and I still think the first was the best out of all of them.

Re: The Hunger Games

ShaneSimpson — Wed, 28 Dec 2011 14:13:52 -0000

I threw these books on my kindle app and found myself reading them every chance I got. Was a little disappointed with the way the story ended, but otherwise it was a great series!

Re: The Hunger Games

Jaz — Wed, 28 Dec 2011 14:03:41 -0000

I just read them a couple weeks ago, too. I had no idea they were making a movie, and now I'm really excited, too! It looks (from the trailer, anyway) like it's going to be really true to the book. Thank you so much for posting this!

Re: Rest in Peace, Ben #CHD

Marilyn Dillon — Wed, 28 Dec 2011 13:10:42 -0000

I almost didn't watch this, but I'm glad I did. What a blessing to be able to say you are proud of your entire life. He must have been an amazing young man. My condolences to his family and friends.

Re: Rest in Peace, Ben #CHD

Teal_Cuttlefish — Wed, 28 Dec 2011 02:00:01 -0000

What a lovely story he shared. My love and sympathy to Ben's family and friends, and to the other heart families touched by this.

Re: Countdown to Hanukkah: 12 Days

Jen Lepp — Fri, 16 Dec 2011 00:53:01 -0000

I'm glad you like 'em. It's definitely been fun looking em up. :)

Re: Countdown to Hanukkah: Feast of Lights

Jen Lepp — Wed, 14 Dec 2011 12:11:51 -0000

I just looked on Wikipedia - you know the number wasn't taken down until 2008? I had NO clue that it ran that long!