Merry Christmas Eve

Merry Christmas Eve to all of our friends. We just had a wonderful family dinner with our friends the Cohens again, and it was more reflective this time for me. 

Aside from all of the kids having a great time, and the adults laughing and telling stories, it was a chance to reminisce back to our childhood. Our family, along with the Cohens grew up together  playing soccer every Saturday for 16+ years. We had soccer parties, birthday parties, sleepovers, little Indian princesses, you name it. But we were always together. And every Christmas, Heather Cohen would come over to our house and spend Christmas Eve and day with us. 

And now here we are, with kids of our own, starting our own traditions and making new memories. It was very cool watching the next generation tonight playing with balls in the backyard and toys in the house. Exchanging presents and playing with the new gifts. Laughing, crying, screaming, fighting, all the kids creating noise. And Caelen and I get to be a part of it. 

I never dreamed 15 years ago that this is where we'd be. I didn't even dream 15 months ago that this is where we'd be. But I'm so glad to be here now. 

Merry Christmas to all, and to all of our prayer angels, we wish you a good night.

And a Happy Anniversary in Heaven to Grandma Doris and Grandpa Joe. 

Love,

Katye & Caelen

Crazy toddler

We're sitting in Too Jay's restaurant for dinner with Jen, Noah and kids, plus Noah's mom Joanne. We are the youngest table in here, which is good because the 3 kids are yapping and screaming and being "the kids in the restaurant you want to avoid."  My ears are ringing, the hand sanitizer is flowing as Caelen is touching EVERYTHING...and then I stopped freaking out about the noise, germs and bad children in the restaurant behavior because I realized, this is everything I prayed for last year. All of this, the good, the bad, the ill behaved. Every single second of it. Caelen is everything I dreamed and wished for, and he's here next to me, throwing Cheerios and saying  "mommy, mommy, mommy" times infinity. 

And I'm grateful. 

Happy Thanksgivukah

Happy Thanksgiving and Happy Chanukah friends.  We have so much to be thankful for this year. 

First, I'm grateful for all of the amazing doctors, nurses and staff at CHOP who saved Caelen's life last year. Getting to have more time with Caelen is a daily blessing, one that is not taken for granted. Caelen is the light of my life and he makes all the past struggles worth it. 

I'm also grateful for all of the friends and family that have walked this journey with us since Caelen's diagnosis four and a half years ago. We have met so many amazing people, new friends really, and our lives are fuller because of all of you. The heart community is a small one, but you've all become part of our circle. 

I'm grateful for our first Thanksgiving in Florida with family and friends. Caelen is adapting well and the weather is certainly helping his lungs. And sorry to our friends up north, but being able to wear flip flops and tank tops is a nice bonus too. Heard ya'll were a little chilly today ;)

And last but definitely not least, I'm Grateful to God for carrying me this far. Everything that we went through had to be done for me to see my own footprints again.   

And now on to the good stuff. To quote Caelen's favorite show, Yo Gabba Gabba, "I had a great time today!  But first, let's go back and remember what we did today."

Caelen and I joined my sister Jen, Noah, Lily and Baby James at the home of some of our oldest friends, The Cohens. There were 6 kids 4 and under, and it was controlled chaos. The kids were very entertaining and there were lots of laughs all around. Caelen enjoyed playing their piano while Lily sang crazy made up songs. 

Caelen even got his very first Chanukah gifts, so topping this Thanksgiving will be a little tough next year. Thanks Grandma Ellie and Heather, he held his presents the whole way home. 

And then of course the food was amazing. Grandma Ellie is a fantastic cook and I'm still stuffed. Thank you all for welcoming Caelen and I today 😊

Tomorrow starts Christmas insanity over here, so I need to start working on holiday cards. Speaking of, I cannot find my address list in the move, so if you'd like a card from Caelen please send me your address. 

Love,

Katye and Caelen

New Home - Florida!!!

We've had a lot going on in the last few months.  My sister Kelly got married in FL in September and Caelen was the ring bearer. ( I'm still waiting on pics from the photographer, so when they eventually become available, I'll share them here.)

Then when we got back to MD, Caelen had to go back to CHOP for 8 days to transition off of his lovenox, which was a blood thinning shot that he got twice a day, and onto Coumadin.  It took a little longer to get his INR levels right, but now we're done with the shots, thank God, and he just has to get stuck once a month to monitor his levels.  Once we got discharged, we had a week before the movers came to pack us up and move us to Florida.  The movers came on the 25th and Dad drove us home on the 26th.  Unfortunately, Caelen casted the whole drive, which was not fun, but he got them out and we arrived at my sister's home on Sunday afternoon.  Thankfully, he's been healthy and cast free since we arrived.

October was quite the whirlwind month for Caelen and I.  But we made it to FL just in time for Halloween and Caelen had a great time trick or treating with his cousins Lily and baby James.  He walked most of the night, and took a few breaks to ride in the wagon, but I was so proud of him for wearing his Planes costume and holding his treat bucket and asking for candy, and saying please and thank you.  What a difference a year makes when Caelen was riding the wagon in the CICU in his homemade Gabba costume (thanks Aunt Jen).

We're busy trying to get unpacked and settled into my sister and brother-in-law's house, where we'll stay for a while before we find a place of our own.  I'm in the process of enrolling Caelen into the special education program down here, as well as meeting new doctors and trying to find therapists.  But we did squeeze in some fun stuff this weekend.  Saturday was the Italian Festival in Jupiter and Jen, Noah and the kids and I all went.  Lots of food, way too much food in fact, but we all had a great time.  Caelen "won" a blow up sponge bob toy that he hasn't put down all week.  Lily rode the rides and James just chilled in his stroller.

Saturday afternoon Caelen took Lily for a cruise in his blue powerwheels, and that was an experience.  Caelen is becoming a pretty good driver, but when it was Lily's turn, she almost ran over Caelen.  But it was her first time driving, so we'll forgive her for that.

Sunday we all went to the green market in Palm Beach Gardens and sampled lots more food.  I bought too much produce that spoiled, note to self: just stick to the pastries and breads, the fresh produce wasn't so fresh.  Lily danced to the live music and Caelen walked around looking at all of the vegetables, not understanding why there were no toy cars to be bought there.  There was a also a firefighter fundraiser going on, and Caelen got to sit in a firetruck, the definite high-lite of his week!

We're looking forward to the next phase in our lives here in FL.  I'm sure we have lots of fun adventures ahead of here with friends and family, and I'll post updates when I remember.

And I need to say a huge thank you to my mom for flying up to help Caelen and I our last week in MD, my Dad for flying up to drive us home, and Jen and Noah for taking Caelen and I (and all of our crap) into their home, and giving us some time to get settled and look for a place of our own. Thank you to all of our friends in MD that helped us get here, and everyone that has prayed and keeps praying for us.  It's been a long year, but I'm excited for Caelen to grow and excel and get a chance at health and a more normal life.  Thank you all :)


Love, Katye and Caelen

Thank you!!!

Wow!!! The words "Thank You" seem to be an understatement when it comes to all of the donations you guys made for Caelen and Troy.  Together we raised $2,650 for Caelen and with help from Troy's friends and family, we raised a combined $6,320.  This is simply amazing and I'm so incredibly grateful to all of you for helping Caelen, Troy and other children suffering from congenital heart defects.

This is our very first fundraiser and I wasn't sure what to expect, but the outpouring of love for Caelen, Troy and our heart friends is overwhelming.  Thank you from the bottom of our hearts for donating, praying for, loving and helping Caelen.

I will be sending out individual thank you cards in the next few weeks to all that donated, but I just wanted to take a moment today to say Thank You.

Feeling blessed beyond belief :)

Love, Katye and Caelen

ECMO 1 year anniversary

Today marks one year since Caelen coded after his Fontan and went on ECMO  (heart/lung bypass machine) for life support.  This was by far the scariest day of our lives.  I've never shared photos before of Caelen on ECMO because even I didn't want to relive what had happened.  But one year later, I'm glad that I have the photos to see how far Caelen has come since those very dark hours.  Fair Warning, these pictures are hard to look at, so I don't blame you if you want to skip over them.

The first picture is of Caelen once he was on ECMO and cannulated through his neck, hence the scar on his jugular that some have noticed.  The second photo I hate, but I remember one of the medical team insisting we take the photo because I was so scared that Caelen was not going to come back from the OR.  Looking back, I'm glad she took the picture.  It shows just how scared Martin and I were, and the hell that we had all been through in the last 12 hours.  And the last photo was once Caelen had come back from the OR and cath lab, and the ECMO cannula had been moved out of his neck and into his chest.

And now here we are exactly one year later.  Caelen has traveled to Florida twice, even flying down one of the trips to be a ring bearer in my sister's wedding.  One year ago today, the future was scary.  We didn't know if Caelen even had a future.  And now he's running around the house, singing and dancing to country music, playing cars on the floor, couch, walls and any surface he can find.  He loves to go in the pool, ride his bikes and ride our dog Brid.  Caelen loves to give kisses and hugs, and is a great snuggler.  He's funny and smart as a whip, which gets him into trouble quite a bit.

Yes, one year ago these are all of the activities and traits that I couldn't fathom.  But by the Grace of God, Caelen's amazing medical team, and all of you that prayed for us and with us, we get to celebrate the miracle that is Caelen.  

Caelen and I were recently asked by our heart friend Troy Rice to help raise funds for the American Heart Association's Palm Beach Heart Walk tomorrow.  And seeing what a difference a year makes, we want to ensure that future generations of children, like Caelen, have the opportunity to live heart healthy lives.  Please help us make a difference in the lives of children with heart disease.  Congenital Heart Disease kills twice as many children every year as cancer. 

Please click the link below to make a donation, even $5 makes a difference.  

Caelen Gorman Palm Beach Heart Walk

And a huge heartfelt Thank You to all that have already donated for Caelen and Troy.  We've more than surpassed our goal and it shows me just how much you all love Caelen.  Thank you :)

With much love and gratitude to all who have walked this path with us and helped get us here today,

Katye & Caelen

Heart Friends

I am beyond sad tonight. We have lost 2 heart friends in 24 hours and my heart is breaking for their families.  Nothing can prepare you for the loss of a child, and having been close a few times with Caelen now, it just hits too close to home.  

I'm so grateful that Caelen is still here and thriving, but these losses are crushing. When anyone loses a child, you grieve. But when a heart friend loses a child, my whole world and every cell of my being weeps.  I'm reminded how cruel CHD's (congenital heart disease) are, and that we can't take anything for granted. 

So in tribute, here are our 2 newest Heart Angels.  Fly high James and Fly high George. 

James Roberts-Scichilone passed away yesterday at Boston Children's Hospital. He was a beautiful 1 year old who had just had his third open heart surgery. Two weeks ago he was playing at home in FL before he got rushed to Boston. His marathon surgery was Wednesday and after a difficult recovery, he suffered a massive stroke yesterday morning and he just couldn't stay any longer. He is survived by his amazing mom Mackenzie and his Dad Michael, as well as three older siblings. 

George Lagerstrom passed away this morning in his sleep at his family's cabin. He was 9 years old. We met George under the worst circumstances last fall at CHOP. He was also on ECMO after his surgery and had a very difficult path. It took a while, but George kept fighting, and fighting and fighting, until he made it back to a Minneapolis hospital on Feb 28.  George came home from the MN hospital on Mothers Day and thrived once home. He even got to go back to school recently. So although I don't know the details, I know that he had a great summer, was very happy, and was surrounded by his family when he passed. He is survived by his incredible mom Julie, Dad Ed and two older siblings. 

Scary Fact:

Did you know that twice as many children die every year from CHD than do childhood cancer. Why?  Because Childhood cancer is better known and better funded. What can you do?  Donate to The Children's heart foundation to fund research for pediatric congenital heart disease. Everyone likes a tax write off. 

Also, pleass pray for my friends and their families during the most awful of times. 

Rest in peace sweet little James, and May the Force be with you George. You've both forever stolen a piece of my heart and you will never be forgotten.  Fly high boys, Fly High!!!

 

Florida in July and Caelen turns 4!!

I am so far behind in my updates that I will just do one giant one that will cover our summer.

Florida
Caelen had a great time in FL in July.  We were back for our annual trip and Caelen had a blast playing with his cousin Lily and meeting his new cousin, Baby James.  We stayed with my sister Jennifer and her husband Noah and managed to drive them crazy.  But that's what family is for, right?  We got plenty of time in with Pop Pop (my dad) and Gigi too.  We even squeezed in some time with my best friends Morgan and Jason Carpenter down in Boca, and Uncle Jason took Caelen and I on a boat ride.  Caelen loved the boat and even got to help drive.

We spent lots of time at the pool and visited the turtles again at the Juno Beach Marine Sanctuary.  Caelen also loved playing in the backyard, be it sunny or rainy.  We filled our days with lots of outdoor playtime and errands.  Caelen has a new favorite store - Walmart.  Lord help me!  Good thing Walmart is not close by Annapolis, or I'd be in trouble.

Thanks Tara for the cool pool!

Hard to get shots of Caelen and Lily in close proximity.  But she acctually allowed Caelen to come snuggle before he acted up and she ran away.

Jen's boss Mr. Troy came by for a visit when we had to cancel visiting everyone at FP&L on a couple occasions.  Mr. Troy is also a heart warrior and has been praying for Caelen and keeping up through our blog.  He brought Caelen some early birthday gifts, all Monsters University, and as you can see from the pics Caelen loved them!  Thank you again Mr. Troy!  We promise to make a visit to FP&L next month to say thank you, hopefully we can feed the turtles too.

Uncle Jason taking us boating :)

Uncle Noah and Caelen playing "dolphin"

Caelen turns 4!!!
My baby isn't a baby anymore.  He's growing up so fast, I need to hit the pause button.  This has been a challenging year, but it's been a good year because Caelen is still here.  We came very close to losing him last year, and we've certainly had our struggles with his health since discharge in December.  But overall, Caelen is thriving.  He's talking up a storm, and he says the funniest things, like "aw shucks!"  He loves his country music, Yo Gabba Gabba, Daniel Tiger, Monsters, Cars and now Planes.  He makes me laugh and he just keeps amazing me every single day.  Caelen is the light of my life and I'm so incredibly blessed to have him here with me.

We had his 4th birthday party at the movie theater.  He wanted a Monsters birthday party but it wasn't playing anymore, so we invited all of our friends to watch Planes with us, and then have an awesome Monsters birthday cake afterwards.  Through the charity Icing Smiles, we were connected with a wonderful local baker named Pam Sargent.  She created this beautiful and delicious fantasy cake for Caelen.  The inside layers were all different colors and everyone had blue tongues afterwards.  I can't thank Icing Smiles and Pam Sargent enough for helping us bring Caelen's request for Monsters to life.

Thank You Steve Seamans for this pic of C

Nurse Amy cutting the cake

We had lots of friends join us, including a few heart friends that we've been close with along the way, and even one of our favorite nurses, Nurse Amy, that took care of Caelen from his 2nd day of life forward. Nurse Amy even cut the cake!  It was a beautiful sight to see her cutting cake for the heart kiddos that she once cared for when they were all critical at one point.  Watching our heart friends running around and playing was kind of like coming full circle.

Caelen had a great time at the party with all of our friends and keeps asking for another party.  He thinks every day is now his birthday, lol!

We are prepping to leave for FL next week for my sister Kelly's wedding where Caelen is going to be the ring bearer.  That should provide some good photos.  He's either going to get distracted and never make it down the aisle, get halfway down the aisle and cry, or never make it down at all.  But we keep practicing at home with Mimi.  I'll try and update while we're down there in September.

Thank you all again for all of your love, support and prayers.  4 is such a milestone considering his surgery last year, and we all feel very blessed to have each wonderfully crazy day with Caelen.


Love, Katye and Caelen

Cardiology clinic

We are just leaving CHOP for Caelen's clinic follow up. He had a blood draw, EKG and echo. All were good and we don't need to be seen again until October :)

We discussed the plastic bronchitis and transplant, and what Dr Rychik said is that we are taking a wait and see approach. He felt confident that we have attained a level of stability and the goal is to maintain it. If something starts to change, or the plastic bronchitis becomes a bigger problem, then those are the triggers that would precipitate the listing process for transplant. 

Overall, Dr Rychik and Katie Dodds were pleased with Caelen's health and his progress. We even got to visit a few of our favorite friends, Weston and Khloe, and both looked good. It was nice to be back at CHOP and see friends. 

On our way to CHOP with a blue Mohawk 

Clinic playing with his new favorite toy Mike from Monsters University. 

I know I haven't posted about our trip to Florida but i'll work on that. I've got to sort through photos and get them off the camera, but Caelen had a blast in FL and got in plenty of pool time. 

Thank you to all who keep Caelen and our heart warriors in your prayers :)

Love,

Katye

Birthday Wish

It's my birthday, and I realize that this blog is dedicated to Caelen, but I wanted to take a moment and share my birthday wishes with you.  I feel like since my wishes have been pretty public this year, it's not bad luck to share what I'm asking for.  They're pretty simple, and I ask that you wish with me.

1. I wish for Caelen's good health and a long and happy life.
2. I wish for Weston Keeton's Gift of Life - his double lung and heart transplant, FAST. http://www.cotaforwestonk.com/ 

That's it, 2 wishes.  Seems simple enough...Anyone that wants to wish with me, please say 2 extra prayers today.  And fun fact, Weston's mom Julie Keeton has the same birthday as me.  Pretty damn cool that we were put in each other's path.  

And a bit of good news on the Caelen front...actually awesome news...we were approved by an amazing charity called First Hand Foundation to purchase an FAA approved POC (portable oxygen concentrator)!!  This is the device that anyone traveling with oxygen must have to fly, both commercial and private (or take a train, etc).  To us, this device means freedom.  This is what Caelen must have to fly from MD to FL, and FL to CHOP, and anywhere else that we may be lucky enough to travel.  I just got the news and I can't begin to tell you how Blessed how I feel.  And I really owe it all to Julie Keeton who pointed me in the right direction when I hit a wall with insurance, and she guided me to find the right charity.  And of course a HUGE Thank You to First Hand and Stephanie Keck for blessing us and approving us.  Your gift has opened up doors and given Caelen the freedom to become more mobile.  From the bottom of my heart Thank you!

So, Happy Birthday to Julie Keeton and I, and to our boys, I wish you both the gifts of health and life :)

Weston update - great news!

Here is Julie's updated blog, thank you all for the prayers, God heard us :)

http://cotaforwestonk.com/node/531

If you can't access the blog, here is the post:

The power of Prayer

I know I haven't updated so bear with me.  The thought was that Weston was fluid overloaded, we would come for a cath and they could figure out a reason for his heart failure. They ruled out tuberculosis, whooping cough, micoplasma, pneumonia, and a whole host of respiratory viruses.  Weston had other plans.  No cath because he was so sick.  He continued with the coughing through night before last.  During that night (Thursday night) he coughed so much and Dr. Hanna was called hourly because nothing was helping.  Weston couldn't breathe.  Around 8 am, all hell broke loose.  Weston was gasping.  His respiratory rate was in the 70's-90's with intermittent throw up, lethargy, and him having a glassy eyed stare.  He wouldn't make eye contact.  He wouldn't talk.  It was horrible.  The doctors were paged immediately and the thought was that he was definitely in big trouble.  Dr. Peridon (great doctor who has been with us for the past 3 July's that Weston has almost died) came in and explained that Weston was in a critical spot.  His body was working so hard to breathe that he was afraid he wasn't strong enough and would give out.  He said they wanted him NPO in case a breathing tube would be needed.  As I have talked about before, breathing tubes are awful on PH kids and if Weston ever went on one, the likelihood of him coming off would be slim.  I immediately needed to call Adam to get to Philadelphia NOW.  He was on a job so I called his friend Stacy (great guy who will track down Adam in a second) but, come to find out, HE was on the job with Adam (what luck!).  I called my friends Ginger and Greg and told them that they had to find Adam ASAP and let him know that he needed to come now.  Then, I called my Mother In Law and told her that she and Doug also needed to come and to please bring Easton.  While Weston was in and out of it, he just kept asking for Easton. It broke my heart.
This is also when the prayer chains started.  As we were trying to work with Weston to get him comfortable, get a new IV in to get lab work, and try to explain to Adam what was going on, people were praying.  We felt it in the room, I felt it in my heart, and I know, Weston felt it in his lungs.  I know, I sound crazy saying that but it worked.  He calmed down just enough to be able to swallow his diuretics.  Then, the pee started-like a floodgate opened.  He started peeing off the fluid that has been suffocating him.  Then, he asked to eat.  Dr. Peridon came back down and said that he could eat if he felt like it (thinking Weston wasn't going to feel like it).  BREAK OUT THE HOT CHEETOS.  Thank you Jennifer Schoondyke and Kari's Heart for sending him the food that the loves the most in the world other than Pals.  So, at 8am, we thought he was going to die, now move to 10am with him being sent to the CICU eating Hot Cheetos and waving like he was in a parade.  God is so good.  I could just stand back in awe.
We got him settled into his room and Chris (a nurse we had only had once before but geez, if he isn't the nicest, friendliest guy) tried to put my mind at ease.  Weston was perking up.  He cheered for every positive thing and that made a world of difference.  By the time Adam arrived at 6pm, he looked good.  Still struggling to breathe but alert.  By the time Easton arrived around 8, Weston was ready to bounce off the wall with him.
His night was even better.  He coughed a few times but nothing like before.  Today, he took his oxygen mask off a bunch of times and didn't desat which is a Miracle.  He even had his favorite lady in the world (other than Nana and me, of course) with him-Salina!  He had all of his friends in the CICU visiting and making him laugh.  That is what is so special about CHOP.  God has placed it in these nurse's hearts to love these critically ill kids.  They are amazing.  At rounds this morning, I felt strongly that he needed to go back to the CCU.  He needed to be able to move around, play, and get the fluid off.  Around 5, he was transferred to Maureen-who has had him a bazillion times and Amy is with him tonight.  Both know him so, so well and take the best care of him.
The power of prayer has overwhelmed me this time.  This is the 3rd July (I know it isn't July yet, but close enough) that we didn't think Weston was going to make it and by God's grace, tonight, he is hanging out, eating chinese food, and excited to play with his brother tomorrow.  We couldn't be more thankful!

Love, Katye and Caelen

Weston update

From Julie, Weston's mom:

Just a quick update-Weston got moved over to the CICU. He perked up a bit right before we came over and ate Flaming Hot Cheetos. He is still breathing really fast and hard. They have started 2 IV antibiotics to give broad spectrum coverage. We have a great nurse and Weston, is, of course, the prince of the CICU. Both of his RRP (respiratory virus panels) came back negative. He is also negative for Whooping Cough, Pneumonia, and Micoplasma, so when he starts feeling better, he can go on some walks to help get the fluid off of his lungs. They still aren't sure what is wrong but are ruling things out quickly. Thank you all for the prayers!

Please keep praying.

Love, Katye and Caelen

We need huge prayers for our friend Weston

Friends, our dear heart friend Weston Keeton needs the biggest prayers you've got right now please. He is back at CHOP after getting sick and is struggling to breathe. I don't know much, but here's what I've been told:

"Things with Weston have declined pretty rapidly.  He is struggling to breathe and they don't know what is wrong.  We are waiting for a bed in the cicu and more labs to come back.  I've not seen him like this in a long time.  Please pray for him and for Adam, Pam, Doug, and Easton as they travel up. "

I ask all of you to please stop and take a moment to pray for sweet, sweet Weston. He is 6 years old and the king of the cardiac floor at CHOP. Please pray that the doctors can figure out what's wrong and heal Weston. Please pray for him to stabilize, his lungs to dry out and his breathing to become easier. Please also pray for his mom Julie who is with him now, and his Dad Adam and family who are driving up from TN. 

I'll update more once we hear. Thank you all so much for being in this with us and including our heart friends in your 

prayers. 

Here is his website. 

http://www.cotaforwestonk.com/

Love,

Katye

Shortest Hospital stay yet!

We got home from CHOP Saturday evening and Caelen jumped right back into his toys, and slept almost 12 hours that night too.

I got the results from his ultrasound, and the awesome news is that the clots in his right sub clavean (closest to his heart), and his left leg are gone!  9 long months of twice daily lovenox injections and the clots are history.  My hope was that we could now stop the lovenox and give his poor legs and arms a break, but CHOP said no because Caelen is prone to clots, and he has stents and the device to block the fontan, so for now, we're stuck.  Oh well, atleast the clots are gone.

He's still casting, but not as bad as last week, so hopefully we're on the tail end of this cold.

Caelen and I are getting ready for our annual vacation to FL for the summer.  There's a lot more equipment to pack this time, and we can't fly because we don't have a portable oxygen concentrator that's FAA approved for the plane. So my brother-in-law has been volunteered to fly up and drive us home.  Lucky guy, lol.  He survived 3 days driving cross country with my younger sister, and multiple treks cross country with my older sister, so hopefully this 2 day trip with Caelen and I won't put him off road trips forever.  He knows about my OCD and controlling ways when it comes to Caelen and his meds, but in the past, he could just go to work or walk away.  Now he's stuck with me for 24 hours, ha ha.  Prayers for his patience and sanity ;)

We leave on Monday to start the drive down, so I'll update once we get down there and get some good shots of all the kids playing together.

Love, Katye and Caelen

Getting outta here

Caelen is doing good and we are just waiting on discharge. Thanks everyone again for your prayers :)

Love,

Katye

Back from sternum procedure

Caelen's sternum wire procedure went quickly and smoothly. As usual, he took a lot of ketamine and midazolam to go down, so he was very groggy and stoned when he woke up, and has remained that way now for about 2 hours. His first very slurred words when he woke up were, "I wanna go on a wagon ride."  

Dr Fuller was able to make a tiny incision in his sternum and pull the wire out, leaving just 1 stitch inside, and a steri-strip on the outside. No follow up is needed. 

The results of his ultrasound are not available yet, but I'm assuming that we will remain on the lovenox (blood thinner) for the time being. It would be awesome if the blood clots have resolved by now and we could stop the injections, but I don't want to get my hopes up.  

Caelen's breathing is much better, and thats the whole reason we came here to begin with. So the hope is that we could be discharged tomorrow afternoon. Of course we won't know that until tomorrow morning, but that's a good goal too. 

I'm exhausted, so I'm signing off. As always, thanks for your prayers for Caelen :)

Love,

Katye

Quick trip back to CHOP

Caelen got a cold last week and developed a cast that I just couldn't get out, even with all my super power breathing treatments. So we came up to CHOP yesterday and were admitted. He got pieces of it up yesterday in X-ray when he vomited all over himself and the table, so hey, whatever it takes to get it out. 

He had a good night after that and we are getting some tunes ups today. Aggressive breathing treatments and chest pt, along with a repeat ultrasound to monitor his blood clots, and a small procedure tonight to clip a popped sternum wire that is protruding and irritating Caelen. After the procedure he'll get IV antibiotics for 24 hrs and then hopefully home on Sunday, pending his breathing and the casts. 

Aside from all of the medical stuff, Caelen is very happy and we've been in the playroom most of the morning. We even got permission to go downstairs so I could get some tea. He was happiest cruising in the wagon and in the elevator, but not stopping for me to buy my tea. So I know he's feeling better :)

He even got in some music therapy class this morning with Miss Sarah. He banged on drum and strummed her guitar. 

I'll update later on tonight after the procedure and hopefully the ultrasound. 

Love,

Katye & Caelen

Long overdue transplant update

Sorry its taken me so long to update.  We've been busy having fun and living life at home.  But Caelen is doing well. He's happy and growing and talking and signing up a storm. His casts have slowed down now that his bosentan has been doubled and the weather has gotten better, especially the pollen.  The only negative effect he's had so far that was weather related, was the 2 days we had poor air quality about a week and half back.  Caelen was really struggling to breathe, just huffing and puffing and I had him on 3.5 L of oxygen, which is a lot.  Fortunately, when the air cleared, his breathing went back to normal.  So it's definitely something that I need to keep an eye on this summer, as Annapolis has a lot of poor air quality days in July and August.

As for transplant status, we still don't have an official answer, and this is because Caelen is doing well.  I got a call from one of the transplant nurses back in May saying that basically, because Caelen is doing well and there is no immediate reason to get all 5 critical doctors together, they have held off on presenting his case.  His cardiologist has approved this decision to hold off on presenting since they have all the data they need, the cath was already done, and again, because he's doing well.  Dr. Rychik (cardio) also said at our last clinic visit that he didn't feel that Caelen's candidacy will be a problem when the time comes.  So I haven't pushed the issue because I'm not trying to tempt fate or invoke the evil heart demons, or whatever you want to call it.  Instead, Caelen and I spend our days with teachers, therapy, car rides and play dates.

Speaking of play dates, we've been spending extra time with cousins PJ and Brigid at Aunt Cheryl's house, and playing at Ms. Jen's house with her two girls Norah and Audrey.  Ms. Jen has a small zoo and Caelen loves to play with their dogs, guinea pigs, chickens and fish.  Oh yeah, the crabs too.  He never wants to leave and giggles when the girls put their guinea pigs inside of the barbie cars and buses.  He actually calls the pigs "chickens."  When it comes to cousin PJ, Caelen is infatuated with him.  He wants to follow PJ and be wherever he is, doing whatever he is doing.  It's really cute to watch Caelen in awe of PJ :)

As for the move to FL, that's been held up by some technical issues, so for the time being, we're still in MD.

Here's some pictures that my mom took this morning of Caelen playing in the rains of tropical system Andrea.  He had a great time playing in the puddles and didn't want to come in.  Don't mind the giant bump and bruise on his head again.  He tripped on his shoes and fell on the exact same spot that he hit his head back in March.

Time to run, I can see Caelen trying to take my mom's ipad.

Love, Katye and Caelen