Thursday, January 13, 2011

Mini update

So I am trying to get into this whole blogging thing.  Please be patient with me as I figure out how to upload pictures, videos and other cool stuff (that I don't know about yet).  To be honest, I have no idea what I am doing, or if anyone is going to get this, but here goes nothing...

Caelen saw another cardiologist last week and this Dr. seemed to take a different approach than past cardiologists.  Not that this or good or bad, but he (the cardio) did a great job of better explaining Caelen's upcoming procedures and his likelihood of learning disabilities as well as complications that can arise from the next surgery.  Ugh, did I actually just type those words --> future surgery.  Makes me nauseous just thinking about it.

The doc told us that Caelen will need another cardiac cath (angioplasty) in the next 2 months.  He actually mentioned early Feb but I am going to postpone until we can resolve the insurance mess.  Moving on, the cath is actually the pre-Fontan cath (Fontan being the 3rd surgery) and it is typically done @ 1 year from the Glenn (2nd surgery).  We knew he needed a cath again, just thought it wasn't going to be till early summer.  The doc thinks that there may be some collateral veins coming off the SVC (superior vena cava) and going to the heart instead of the lungs, thus the heart is stealing the lungs oxygen and this "may" be why Caelen still needs oxygen.  The cath will also take pressures inside the heart and give us the best picture of what is really going on inside.  From here, we will have a better idea of when the next surgery will be.  Typically, the Fontan is done around 24 months, but obviously we are going to wait as long as we can, while still being safe before Caelen goes back in for any surgeries.

The doc mentioned that long term complications that can arise from this heart condition are blood clots and stroke, and then about 50% of the kids develop learning disabilities such as dyslexia and ADHD.  This was the first time that a Dr. actually took the time to talk about Caelen's future with us, so in a way it was scary because the future is so very uncertain, but in an extremely glass is half full mentality, I saw hope of an actual future.  Dyslexia and ADHD can be treated and there are lots of parents that deal with this on a daily basis.  (Someone remind me of this 5 years from now when Caelen is climbing the walls and writing things backwards in red paint he found in the garage.)

Other than the future stuff we are pretending not to worry about right now, Caelen is thriving.  He did catch 2 back to back bugs already and to quote our cousin Cheryl, "tis the season", but I did make it out to Babies R Us with Caelen in the shopping cart, that was a first and he did great.  We had dinner out with Martin's family, he also did great, then we watched a football game at cousin Cheryl's where we got her son sick.  Still sorry about that by the way.  Caelen has had a few visitors and he really enjoyed them, even if they did make him do physical therapy, but he gave them smiles as they left.  He loves to smack and hit and scratch, typical toddler stuff right?  Not too impressed with soft stuffed things, but if it makes a noise when hit then he is all about it.  If he was a better behaved toddler, I could get video of him doing said things, but as soon as the camera light goes on, he stonewalls.  No surprise that he's a smart ass at 16 months.  After all, he is a Gorman/Herron.

Well, that's all for now.  Caelen is waking from a nap and I have to figure out how to send this.  Love to all and hope everyone has a great weekend.  Go Ravens!!!!

P.S. Thank you to all who sent Caelen Christmas gifts, I ran out of thank you cards, but as soon as I get more I'll start working on getting them out.


  1. Yea for all the good news!!!don't stress too much about the learning disabities right now...Tristan is showing small signs of dyslexia but no one, (teachers or special ed teachers)is worried about it yet. As for the ADHD we are having Tristan evaluated every 6months to stay on top of it...But honestly the steriods he is on right now is making him climb the walls so i am not sure what is worse. I promise when we can get healthy we will come visit and play!! Miss you lots. Steph

  2. HI! Thanks for stopping by my blog today. Are you local to CNMC?? I noticed a lot of the blogs you follow the kids were there. We are in NoVa.

    I want to see what Caelen looks like!! TO upload a photo, when you are in the blogging screen, there is an icon of a mountain with blue sky (third from the right), click on it and then click on the grey button that says browse. Find the file on your computer and double click on it. Then push the organge upload button at the bottom. IT will put your picture at the top of your post and you can edit around it. if you want more than one photo, click the little button that says add more photos/files. email me if you need help. :)
    Okay, have a great day.

  3. Welcome to the world of blogging! It sounds like things are going great for you guys. Sorry about the cath bomb that was dropped on you. I hate that. Maren had her Glenn over Easter in 2008 and then didn't have her Fontan until this past summer-- more than 2 years later. That's when she was ready, I guess. I hope you're liking Caelen's new cardiologist :) I had never heard about the ADHD or dyslexia issues. Awesome. Something to look forward to, I guess. Really, there's no crystal ball. When I asked the doctors what lay ahead for Maren, most would say, "we just have to wait and see." I HATED that answer, but they're right. I can't wait to see pics and videos!!!

  4. Love the new blog! I enjoy the freedom blogspot has to offer with pictures and videos compared to CarePages. I think you'll like it!

    I have to agree with Stephanie and Sarah. Even though it's nice to be given a heads-up on possible future problems, there's no way to tell for sure what our HLHS kiddos will have to deal with in the upcoming years. It's nice to prepare yourself mentally but hard not to worry. The amazing thing about our cardiac babies is that they have beat the odds and continue to amaze and inspire all the time. I look forward to new videos and pics of your little man! :)

  5. Yeah Katye! You are amazing! Hope C's legs aren't shaking too much from yesterday:0) So Happy to see that almost all my favorite people are following your blog too!