Good Morning and Happy Friday!  The snow blew through so fast last night there's barely a dusting.  I know this will be the best birthday gift Martin could have asked for...yep, it's Martin's birthday.  Everyone please call/text/email him with Happy Birthday wishes, it'll embarrass him and buy me time to work on getting his cards today. 

We had our appointment on Wednesday in DC at the cardiology clinic and while there, a chest xray was done.  The Dr was looking for pleural effusions or haziness and thankfully, the xray was good.  Here's a picture of Caelen smiling for the xray.

He's such a ham.

Next we got a checkup and tried to understand why his oxygen levels have been all over the map lately.  He seems fine during the day (for the most part), then at night his o2 levels drop.  (more on this later)  The Dr didn't seem terribly concerned right now b/c he looks stable and he's happy so we met next with Kanishka, the Dr that will be doing Caelen's cath next month.  Kanishka said that going in through the hepatic artery (liver) is not the easiest way, but in kids like Caelen where access is an issue because of occlusions or scar tissue in the femoral arteries, this is more common.  If I am repeating this correctly, an incision will be made on his right side and they will go in above his liver but below his diaphragm.  Any of my medical friends feel free to correct me.  I just write this stuff.

All the while Caelen is sitting on my lap getting very bored and throwing his toys on the floor.  When I wouldn't give them back, he tried very hard to bite me, repeatedly.  Yep, we have a baby vampire on our hands.  I believe the common term is "toddler."

So Martin and I felt relieved after talking with Kanishka and are anxious to get this procedure behind us.  We're all hoping that this cath will give us an answer as to why Caelen still has a dependency on oxygen, as well as a better idea of how much longer we can wait before doing the next surgery. 

We saw GI yesterday and while there, the pulmonologist came out to say hi.  I told her about Caelen's o2 dropping, went over all the weird stuff and mentioned his sneezing fits.  She said he probably has post-nasal drip (allergies) and to try benadryl for 3 days, see how he does, then switch to something like claritin.  I feel so much better having run into her b/c we kept thinking all of this was tied to the sneezing, but I guess we were asking the wrong doctors.  So last night we gave the benadryl a try and his oxygen levels were much improved.  Hopefully this is our answer.

One last funny note b/c I know this is getting longer...
I was getting Caelen ready for bath last night and took his diaper off after safely waiting an hour for his diuretics to work.  He was having naked time on the rug and loving rolling around.  I would like to mention that I never do this out of fear of accidents but thought I was in the clear.  So I am on the floor with him eating his toes and said, "Caelen, you need your bath, your feet smell like your butt!  Ewww."  Then I turned to see his butt and was almost nose deep in poop!  Yep, he pooped then almost rolled in it.  There should of been video of me holding Caelen on his side with my foot while grabbing the wipes and a diaper with my hands and cleaning the poop.  He will hate me for this when he's older.  Perhaps this is why he bites me now.

I have been trying really hard to get video of Caelen making noises and finally succeeded.  Here's a too long video of Caelen's elusive screeches.  I don't know how to edit so fast forward to about 1:14, 2:24 and 4:12.

We hope you all have a great weekend!

Love,
Katye, Martin & Caelen

old video new update

Bear with me as I figure this stuff out.  A ginormous thank you to Sandy for helping me :)

We are meeting with the cardiologists tomorrow to discuss Caelen's cath next month.  Looks like it is going to be a bit more challenging that we originally thought, but we'll post an update on Thursday.  In the meantime, I need to start taking more videos, this one is from mid-december and although Caelen is very loud and can be obnoxious if ignored, he refuses to make a peep on camera.  I will try harder to get some shots.

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.