Happy New Year

I know that I am way behind in posting pics and updates since we came home from the hospital.  I will make this solemn resolution to be more diligent with updating the blog in 2013.  I predict I will fail at my resolution early on in January.  But my intentions are good.

So on with the updates.  Since too much time has passed since discharge, here's the recap:

1. We came home from the miserable third open heart surgery, the Fontan, on December 6, having gone in on September 25.  Caelen is no longer a Glenn, but not a Fontan either.  He is now a "Glenn-Tan." Good luck googling that one.
2. Caelen got to go with us to pick out the Christmas tree this year.  He wasn't interested in the trees, but he did like riding in Daddy's truck.  He did not like meeting a wooden Santa.
3. My dad, Pop Pop, came up shortly thereafter to decorate the house and play with the dog.  Caelen finally took an immediate liking to him instead of on the last day. The outdoor lights shorted out several times, but the house didn't blow up or burn down.  So dad must know what he's doing ;) Brid (our dog) still hasn't gotten over her depression from my dad leaving.  Nor has she regained her obedience.
4. Caelen finally got to meet the real Santa Clause, and it went over about as well as you'd think.  But afterwards, he did give Santa a high five and blow him a kiss.  All is forgiven...until next year.
5. Caelen was in the ER for aspiration pneumonia, got better, then 10 days later had to go back.
6. My mom, Mimi, came up for Christmas and New Year's and got her Christmas wish of an ipad from Aunt Kelly, Uncle Adam and me.  She cried giant sobbing tears of joy, and Kelly got to watch from Canada on facetime.  Priceless, and I think my favorite moment on Christmas.  Now mom finally gets to join in on the facetime chats.  
7. I got the best Christmas gift of my life with Caelen being home.  I am truly grateful to the entire medical team at CHOP for saving my son's life, and I know without a doubt that he has some of the most amazing Angels both in Heaven and here on earth that are looking out for him.  
8. THANK YOU to every single one of you who got us here with your prayers, love, healing energy vibes, care packages, and everything else you all did to help bring my son home.  I am eternally grateful!!!
9. Caelen is making great progress at home and talking up a storm!  He is scheduled to start ECI (early childhood intervention) at the local elementary school in January.  He's still waking up every hour, and sometimes every 30 minutes at night.  "Crying it out" is not working.  So I have been sleeping on the floor of his room since we got home. 
10. I'm exhausted.  Hoping the New Year brings sleep for the both of us.

Speaking of the New Year, I am excited to finally put this saga behind us and move on.  Here's to a healthy, happy and peaceful 2013 filled with good fortune for all.

And no blog would be complete without cute pics.  So here they are:

foreshadowing the real Santa meet and greet at the tree lot

high five Santa

trying too hard for the perfect pic

best smile of the 200+ pics I took at Homestead Gardens

Pop Pop (Clark Griswold) decorating the house

decorating the tree by throwing glitter balls on the floor

playing with the cousins on Christmas Eve

Eskimo kisses

my Angel (with Mimi's glasses)

Merry Christmas!

Mimi and Caelen playing on their ipads

Wishing everyone a very Happy New Year!

Love, Katye

Merry Christmas

Merry Christmas everybody!  This is our official Christmas card since I couldn't get one done this year.  More pictures and posts to come later today.

Love, Katye

Going home

Yay, we are getting a script for antibiotics and getting out of here. We see the team at CHOP on Thursday anyway for a follow up, so they can check Caelen out then too.

He's being his typical self right now, playing with his iPad, blowing kisses to the nurses and climbing on us. All good signs.

Ok, hopefully my next post will be photos from out outing yesterday.

Love,
Katye

ER Sunday Funday

I meant to update earlier since we've been home, but I've been too busy with Caelen. So, the fun pics will come in another post.

In the meantime, we are currently in our local ER because Caelen has pneumonia, most likely from aspiration of either juice or vomit. We are waiting for the Dr to reach one of our cardiologists to see if we can just have antibiotics and go home. Once I know what's going on, I'll post again.

Discharged!!!

Yay!!! We're outta there. Driving home now, well, Martin is. Driving and blogging are not a good combo.

Lots to do once we get home, but I'll update again in a few days.

Thanks again to each and every one of you.

Here's some pics of Caelen saying goodbye to Drs and nurses.

Love,
Katye

Home?!?

Could it be a reality? Looks that way my friends!!! The plan is for discharge sometime Thursday. As excited as I am, I'm still a little apprehensive because I know how things and opinions can change quickly in the hospital, but still, I think we may actually get out of here. There isn't anything else our cardiologist can do for us right now. Caelen needs to get bigger and stronger and in a few years (hopefully), we'll try this again.

I spent tonight packing up and cleaning my room at the Ronald McDonald House and it's so surreal. Seeing the new friends that I've come to know over the last 2 plus months, and realizing that our journey is coming to an end (for now), and theirs continues, is bittersweet. It's like a family here. You share in each other joys and heartaches. You celebrate with them and you cry with them. Being more experienced this go round has allowed me to "foster" parents new to the hospital experience, whether it was intentional or not. I think it helped me to get through this as much as it did them. And in return, my heart expanded.

These last 2 plus months were not what I expected. Never in a million years could I have envisioned what exactly occurred. Caelen came closer to the brink of death than I think is possible, and survived. Not only that, he recovered. Then he developed a deadly bronchitis faster than anyone has ever seen before. He had his Fontan reversed, only to flourish and then drop his sats. But even with the lower oxygenation, he is amazing. He is beautiful. He is smart, and funny, and witty. Caelen is perfectly imperfect and I wouldn't have it any other way. He is my angel on earth and I am lucky to have him.

And I am lucky to have all of you. All that have prayed for Caelen, sent messages, care packages, letters, emails, texts and love. Whether or not you believe in God, I hope that Caelen has helped restore your faith and belief in miracles.

Our journey isn't over, but for now, as the docs say, it's time for a break. Thank you all again for getting us here. Without every single one of you that prayed for us, I don't know what the outcome would have been. Especially my prayer warriors, you know who you are.

Lastly, If anyone is looking to make a donation this holiday season, one that has direct impact, please consider making a donation to the Ronald McDonald House of Philadelphia, or any Ronald McDonald house. I don't know what I would have done without this amazing home. And I believe that donations are tax deductible.

I'll post again once we actually get discharged.

With much love ,
Katye

Happy Sunday

Caelen has had a good weekend. He recovered very nicely from the cath on Friday, and is full of his usual hilarity. He's been given 2 new meds and the docs are watching him to make sure that he tolerates them ok.

And as for home, we are supposed to be getting out of here this week. There isn't a firm timeline, but it will probably be towards the end of the week. I'm excited to get out of here and get Caelen home to all of his toys and his dog, but I'm nervous too. It's kind of a mixed bag of emotions.

He's on a lot more meds than when we came in, and the schedule is a bit daunting. Then theres the oxygen tubing that has me a little anxious. Even though he was on it before, he wasn't moving around. Now he's walking and getting into everything. How am i going to keep him safe? But I'll figure it out. In the grand scheme of things, thats not really a big problem to have when you consider that 2 months ago he was on ECMO and we were worried about brain damage.

And because of just that event alone, I'm so very grateful that we are here, talking about going home and oxygen. I feel beyond blessed that Caelen has been given a miraculous recovery, and that I get more time with him.

Thank you all again for your kind words, prayers, love and support. Thank you to all of those that were behind the scenes. And a giant thank you to my mom who spent a long time up here with us. We couldn't have done it without you Mimi :)

Love,
Katye