Tuesday, January 28, 2014

Here we go again...

And we are off to Philly tomorrow! Wowzers that was fast. So fast I haven't had a chance to update the world about it! We had been waiting to hear back from Dr. Rychik at CHOP to see what he thought about Jensen's latest echo. We got a call on Wednesday last week from Dr. Rychik saying he thought Jensen needed a cath with Dr. Rome in the next few weeks. (Dr. Rome did Jensen's last cath and we love him!) Of course this was pretty much what we were expecting but it makes this mama's heart start to panic hearing those words. 
Then we were waiting on a call from CHOP's scheduling center to choose a date for the procedure. We heard from them late on Friday afternoon, which was so unexpectedly fast! Our scheduled cath date is Jan 31...one week from the call! Of course, we had to immediately start making phone calls and getting paperwork together. Thank goodness that we have done this before and somewhat know the process! 
Sweetest face in the world <3

Most of our arrangements couldn't be made until Monday because apparently people don't like to stay in the office past 5 pm on a Friday to accommodate my needs?! haha! Although this week has been insanely stressful and busy, everything has neatly fallen into place and we are ready to go!

Jensen and his new Snuggle Bunny
The only variable in this whole perfectly planned trip is the weather. Of course it has started to snow here in NC and the whole state may very well shut down at first sight of a flurry. Please pray that our flight leaves on time tomorrow and we have a smooth travel day!
He's our tough guy
Thursday Jensen will be seeing Dr. Licht for an exam and an EEG. We will also be discussing plans for the Fontan, which Jeremy and I have only been thinking about since the Glenn. (Poor Dr. Licht is going to be in for a surprise when he sees our list of questions!!)

He's all ready for the plane ride with his headphones on!
After that, we will be on our merry way to pre-op. Obviously I'm being completely sarcastic and I dread pre-op labs as much as the cath itself. The blood draw is always so traumatic and scary for Jensen, plus he will likely need an echo and x-ray. Here's to hoping he cooperates.

This was after a recent blood draw :(
The cath will be on Friday, we won't know what time until Thursday so I will keep everyone updated. Speaking of updates, I started a group on Facebook called Willis Family Heart (just like our blog so it is easy to remember!). This is an easier way for me to give quick updates and post pictures when I don't have a long blog's worth of info to share. We will still be doing detailed blogs,especially with the Fontan coming up and the links will be on my personal FB and the FB group. 

Ready for cold Philly weather
Please keep us in your prayers as we travel and as Jensen goes through all of these procedures.

Thursday, January 2, 2014

Ready or not, here comes 2014.

Yes, my new year post is a little late. Jensen is still on a present high from Christmas and on a terrible schedule from all of the traveling. Its been a learning experience this holiday season, to say the least! (also I'm just adding some random favorite pictures from the last month for you to enjoy!)

He's too cool for school.
The truth is I've been dreading 2014. I've been dreading thinking about it, writing about it, living it. 2013 was "our year". Our goal as a family was to let Jensen experience all that toddler life has to offer, give him every opportunity, have fun every day and to have no hospital stays. We lived up to that goal and so much more. Jensen did amazing things in 2013, more than this proud mama could ramble on about in one blog. We were so incredibly, blissfully enjoying the care-free life we were living, watching Jensen explore and learn about the world around him.
As I mentioned in my Christmas post, things have shifted. The closer we get to 2014 the more anxiety builds. The more his sats drop. The more I start to panic about what is to come. Can't we just turn the clock back a little?

He's an opportunist and found Santa's leftover cookie.
2014 is the year of the Fontan. Since his Glenn people would ask about his next surgery and we would nonchalantly say, "Oh it will be spring/summer of 2014" and go on about our day. Well that time is here and it makes me want to puke. 

Serious bed head.
We are still in planning mode and no decisions have been made. We are waiting on calls back from doctors' offices and letters to be sent. We are slowly walking down this old familiar path. No reason to rush...we are taking things easy... Except I'm a heart mom and any one of us will tell you that 6 months prior to surgery we all gain 1000 pounds from stress eating and none of us sleep...ever. 

Jensen <3s Thomas!
I have a hard time describing what it feels like to go back to this place for the third time (5th if you count the actual number of surgeries he has had). Everything about this surgery is hard. The cath he will need before the surgery comes with its own set of risks. The pre-op blood work is so scary for him. Handing him over to anesthesia. Getting through scar tissue from previous surgeries. His pesky pulmonary arteries that Dr. Fuller hand-crafted to save his life. The Fontan itself. The neurological complications he's very likely to have. I haven't even mentioned the recovery, the physical setbacks, the pain, the trauma, the night terrors. I could go on and on but you get the idea. Every aspect of this surgery is so excruciating for all of us. 

He's the happiest boy in the world!

So here are our goals for 2014: having a successful Fontan, getting Jensen through his recovery and back to his old self as quickly and easily as possible, and finishing out the year happy & healthy. Here's what we are asking of you: pray for us. We need an army praying for us. This will be our greatest challenge as a family and I know we will need love & support more than ever. You all have brought us through dark times before so we are calling on you again. We know you all love Jensen like we do and we just want our boy to get through this as painlessly as possible. Thank you in advance for your prayers <3 We will keep everyone updated as we get more information!

Love this picture of him and his cousin Payton!

And cruisin on his new Harley =)