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