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

Dr Rome

Dr Rome just came and spoke with us. The leak clotted on its own and the stent wasn't necessary. The downside is that he just isn't getting enough oxygenated blood to his lungs.

Unfortunately, there's nothing else he can do to make Caelen pinker or bring his sats up. He'll have to stay on the oxygen. Fortunately, it wont be 24 hours a day that he needs it, but its back to lugging tanks around again. I'm ok with this though. Caelen is alive and happy and that's what is most important. We've done this before and we'll do it again. Now I just need to figure out what we need to do go home.

Please keep Caelen in your prayers. And Thank You to all who pray for him.

Love,
Katye

Cath update 2

Just got an update, Dr Rome did not place the covered stent, we don't know why yet. He is finishing up and will be out to talk to us in an hour.

Cath update

The RN said that Caelen is doing well. They just finished prepping and are now starting the procedure. It will take a few hours. Next update around 2:00.

He just went back

Anesthesia just took Caelen back to cath lab. First update will be at 1:00 and then hourly afterwards.

Waiting in the CPRU

They brought us next door to the CPRU about a half hour ago, and we are waiting on anesthesia to take us back to cath. We are second case so I don't have an exact time, but soon.

Please say extra prayers today that all goes well.

Thank you!!

Katye

Finally, a Cath date

Dr Rome came in tonight and said that we got FDA approval for the covered stent. So it looks like it will be Friday.

Now on to the fun stuff...we met Carrie Underwood today!!!! How cool is that?!? She is so pretty, and so tiny. We couldn't get a picture posing with her, but we did get an autographed photo for Caelen, and our friend Katie got a photo of us meeting her. What a nice thing of her to do before her concert here in Philly tonight.

Here's the pics of Carrie. Have a great nite everyone :)

Oh yeah, Caelen is doing great, lol. He's talking up a storm and has given up the nap in favor of stirring up trouble in the halls.

Happy Thanksgiving

Wishing everyone a very Happy Thanksgiving! We had a little fun here in the halls this morning and had our own Thanksgiving Day Parade. Caelen only smiled when the camera was down, but at least you get the idea.

We are most thankful for The Gift of Caelen's Life. Thank you to all who pray for us, your prayers have clearly worked.

We were granted another Miracle with Caelen and are ever mindful of our blessings.

Wishing everyone a safe and healthy holiday.

Love,
Katye

Still waiting

No news on the cath. We saw Dr Rome in the halls tonight and he said he hopes to have approval to proceed on Monday. I'm not holding my breath, but he did feel positive about the cath happening next week. So we'll see.

It's literally status quo around here. No one really bothers us too much and we just spend the day doing therapies and walking the halls or cruising in the wagon. As soon as we know more we'll update.

We are working on a Thanksgiving photo and hopefully it'll turn out cute. Till Thursday....

Waiting around

The earliest the cath will happen now is next Wednesady, and if the paperwork isn't ready, then it'll be the week after. Kinda stinks that we're just sitting here in the hospital waiting around, but on the flip side, Caelen is doing well.

I attended the birthday party of a young man named Duwayne today, he turned 10 and got his heart transplant 6 weeks ago. A lot of the regular cast of characters were there to celebrate with him, and as I looked around the room, I thought to myself, how lucky am I to witness so many miracles?! All of these kids that society calls "sick" were there celebrating and eating ice cream cake. Some on oxygen, some on vents, some on dialysis, some on feeding tubes, some in wheelchairs, but all were smiling. So it's little celebrations like this that make waiting around easier. The longer we are here, the more people we meet, and the bigger my heart gets. Whatever is in store for Caelen's future, I know we can get through it.

I always like to thank people for their care packages, so today I am saying a big thank you to the Rhoads' clan, they are fellow heart friends. Thanks for the Gabba pillowcase, Caelen loves it!! And thank you to the anonymous friend that sent the balloons for Caelen and chocolate for me. I wish I knew who sent them, there was no card with the bag. Please chime in and let me know if it was you :)

And thanks to all of you for keeping us in your prayers. I am eternally grateful for all of you.

Love,
Katye

Cath anyone?

Caelen is doing well in the step down unit, but his oxygen requirements during the day are still unchanged. He's only on 1 liter of o2, but he's only sitting in the low 70's. When he sleeps he's in the upper 70's, which for him is fine. But he is on the bluer side.

Dr Rome has an idea and we'll be going back to the cath lab sometime this week to stop the blue blood leaking from the Fontan take down. The idea being that once the leak stops, Caelen will get more oxygenated blood and his sats will improve.

It's called a covered stent and it's not approved here in the US. It is in every other civilized nation, but the FDA hasn't given it the ok yet. It can only get approval though a compassionate care basis, and this is how Dr Rome will get it approved for us. The compassionate care being the cath lab as opposed to cracking Caelen's sternum again and completely taking down the Fontan. Because Caelen has had such a rough go of it, surgery is definitely not compassionate.

There is a ton of paperwork involved for Dr's Rome and Spray, but nothing for me to have to do, well except to pray. Fortunately Dr Rome has used this device before, just not in Caelen's circumstances. So once again, Caelen makes case study. I think he needs a medical journal written about him. He's racking up too many case studies to count.

But all in all, Caelen is doing very well. He's happy as long as no one touches him or messes with him, and he's talking more and more every day. He's using a lot more words than he did before the surgery, and I'm so beyond grateful that he doesn't have any neurological deficits. To come through every thing that Caelen has, and to maintain his beautiful personality makes me realize that once again, we have been granted a miracle. I know I prayed HARD for a miracle, as did many of you, and I just want to say THANK YOU!

I ask that you still keep Caelen in your prayers, as well as the many children here in the hospital. In particular, our friend George and another friend Khloe. All of these heart kids are miracles, and I get to witness it every day.

Love,
Katye

CCU Step down

We made it!!! Caelen made it to the step down unit (CCU) on Tuesday. What a great feeling! He's doing really well overall and plans are being made for eventual discharge home. When that will be I'm not sure. Could be as short as 2 weeks. Could be longer.

Caelen does require more oxygen support during the day now while he's awake, bur not so much while he sleeps. There's a couple of theories on that but no answers yet. In all likelihood he'll come home on some sort of oxygen support, but we don't know if it will be full time, day time or just occasional. That's why we're being watched here in the CCU, to see where his oxygen sats will end up and whether he needs to go back to cath lab now or at a much later date. As in, go home, get the heck outta here and come back for cath in a year. That's everyone's preference.

Tonight Caelen had his first bath in the tub with water since September 23. He was hesitant until he saw the water and then it was game on. Hopefully the pictures will load.

Now we're sitting together in his bed watching Gabba. He keeps telling me, "no sing mommy." Smart ass. This is all we watch and I know every song, but he won't let me sing along. When did my 3 year old become 13?!?

I think that's it for now. We keep pretty busy during the day and stay out of the room as much as possible. Thanks again for all of the love, care packages, support and prayers.

Love,
Katye

Talking, not sleeping

Caelen is so silly sometimes. The poor child is exhausted!! Yet he's laying in bed, in the dark, talking to himself. We're all sitting here trying not to laugh.

Martin gave him quite the workout today. They had a daddy/son bonding day, and I'm not sure who's more tired. There was a lot of walking and wagon rides and Caelen looks great! His sats are a little off, which is weird, but he looks good, and is acting appropriately so I'm not too concerned.

No big changes, he's being weaned down on the milrinone, which helps slow his heart a bit so it relaxes and has time to fully fill. This is an IV med, so it'll be great when it's gone in a few days. At the same time he's being given enalapril thru his g-tube, which does the same thing and he will be on at home.

He's had X-ray and lab holidays, so not much to report on those fronts, but all in all, he's doing well. Martin asked for a report from Dr's Spray and Rome tomorrow to see where their heads are regarding Caelen's progress and status. Once I know more, I'll post.

A big thank you to Aunt Momo for organizing and awesome care package that arrived today. There were so many wonderful people who sent sweet messages, thank you all for your loving words. Sounds like a Florida vacation may be in order to thank the fan club.

Thank you all again for your prayers, please keep praying so we can get out of here.

Love,
Katye

2 good days

Dare I say that we've had 2 really good days in a row? Both of his chest tubes are gone and his X-ray today looks awesome, well, for Caelen it's awesome. He got the art line in his foot out yesterday and we've tried walking again with pt. Lots and lots of wagon rides are our daily exercise and they're made so much easier without oxygen. Yep, Caelen took off the oxygen today around 1:00 and he's been doing great ever since!!

So I'm scared of jinxing things, but hey, they're looking up. We even saw Dr Rome in the hall today and he gave us a thumbs up! Does this mean we've avoided cath lab? Not sure, but no one is rushing to do anything to Caelen right now. And I'm thrilled!!

His milrinone is being weaned and that's the last of the IV meds. He has reached goal on his feeds, so we are going to try for bolus, or condensed feeds soon. Right now he gets 55 cc per hour for 22 hours a day. The goal is to get back to our home schedule of 4 bolus feeds per day. But that goal won't keep us here.

What is keeping us here? Caelens heart and lungs, but he's getting better every day. So we just keep plugging along and getting out of the room as much as possible.

Lastly, our friend Jaclyn is doing better and her anti seizure meds needed an adjustment. She was home around lunch time and even got to go trick or treating. Thank you all for your constant prayers.

Love,
Katye

Happy Halloween

This is the first time we've been hospitalized for Halloween, and I'm a little sad that we're missing our neighbors and the trick or treating, but compared to some of my past posts, Caelen is doing well. So this is hopefully our only Halloween in the hospital. The floor is having a party today and Aunt Michelle sent up decorations for the event, and Aunt Jen made Caelen an impromptu Brobee costume from Yo Gabba Gabba. We have plenty of candy to give out and bags to collect too. Unfortunately Caelen doesn't eat candy, so I'll have to step up and eat it for him. It's the tough things like this that make me good at being a mom ;)

On to Caelen. He developed another infection in his incision and his picc line went bad again. But here's the silver lining : instead of having to go to the OR this morning and get intubated and possibly have his chest opened again, Dr Spray felt that the infection could be drained bedside. And so it was, and it was done by 9:15. The picc line is unfortunate, and he needs access, so he went back to IR again this morning and is there now. He really doesn't have any access left, so I'm praying they find something. But, they let me walk all the way down to IR this morning, even in the elevator and into the bowels of the hospital until he was sedated with ketamine outside the door (his 2nd dose today). He watched Gabba the whole time on his iPad. That definitely helped. Plus, we are getting all of this done before noon. Yay for small miracles.

On a sad note, Please say a prayer for one of our heart friends, Jaclyn. She had a seizure at her school Halloween party this morning and was transported to the hospital by ambulance. I don't have any more details, but she's a fighter like Caelen, so please keep Jaclyn and her family in your thoughts.

Happy Halloween everyone and safe trick or treating.

Love,
Katye

Frankenstorm

The winds are getting pretty intense right now but it's hard to see from our room. We back to another building with a construction site caddy corner. But we can see the street lights and signs whipping in the wind. The hospital has power, hot food, staff and wifi. We lost the hot water but I think we'll survive.

The bridges and highways are all closed so some so the day nurses couldn't get home, but looks like most of night shift did arrive. There are 3 giant cranes across the street and we've been watching them since last night. They're really my only worry. We just started hearing some loud bangs from outside so not sure what it was, but the cranes are moving appropriately in the wind. Well, that's what Jen keeps saying anyway. She has some history with them, so I'm gonna go with her on this one. Besides, she's closest to the window ;)

As for Caelen, he's doing well. He weaned of the nitric oxide last night and is down to 4 liters of hi flow (down from 12). The cath lab is not forgotten, but not imminent either. He got out in the wagon a record 3 times today!! So much easier without nitric. He had a better day too as far as mood and laughter go, so all in all, a success.

Poor Jen did get stuck here though with all the weather. Seriously, who leaves the safety of Florida to fly into a hurricane? Only a Herron. Did I mention she works for a power company that just shipped 500 employees up here to help clean up? She's supposed to be behind a desk, not in the thick of it. Well that'll teach her to come to Philly during hurricane season.

Love to all as we try and sleep and forget about the giant cranes swinging in the near distance.

Lazy Saturday

Caelen's oxygen sats are actually better today. He had a good night last night and we are working hard today to get him to cough and dry his lungs out. His right chest tube was clogged and not draining well, but the team came in and fixed that, then he dumped 105 cc's, so that certainly helped his afternoon X-ray.

His oxygen was weaned down a bit today too. The thought is that the oxygen isn't really helping him all that much because of the leakage around the shunt. But we're keeping it on just to be safe.

We got more smiles out of Caelen again today, and he ate a few ice chips, along with tiny sips of water. That's pretty much all he constantly asks for, water and juice.

The plan for cath hasn't been finalized, but still likely for this week. Frankenstorm is also going to figure into the planning.

That's pretty much it for today. We are watching the storm and trying to figure out what's going to happen. Hope everyone on the east coast stays safe.

Quick and dirty

I haven't felt like updating because there's a lot of complicated stuff going on, but here's the gist.

It doesn't take up to 6 weeks for the shunt to clot off. Don't know where I got that from. It should have clotted by now, but the lovenox (blood thinner) is preventing it. So the o2 sats are lower because the de-oxygenated blood is leaking around the shunt.

Also, his lungs are full of crap, and partially collapsed. That's not the real term, but I'm too tired to type out alveoli and the explanation. So his sats are low bc his lungs aren't fully inflated. We're trying to get him up and out of bed and moving as much as possible.

Next, Dr Rome, or Mr doom and gloom as I now call him, wanted to take Caelen back to cath lab tomorrow and fix the leakage. I said no. I asked for the weekend to try and make Caelen stronger. So that's the plan for early next week, back to cath. Ugh.

He has a blood clot from the picc line, so he's going back to IR tomorrow to get the old one out and place a new one. Hence the blood thinners, but the lovenox is on hold for a few days to try and make the shunt clot.

Now you see why I didn't post. Too much gloom to type out. BUT, we got our first smiles out of Caelen yesterday and lots more today. So that to me trumps all the crap. Dad flew home today and my sister Jen just arrived. So plenty of chaos will continue.

Prayers, please keep saying them. I think the biggest issue now is the lungs, we've gotta get them back up and open. The shunt needs to clot, and the the clot in his arm needs to dissolve. Quite the conundrum. But he's still extubated, so small miracles.

Alright, bed time.

Love,
Katye

Extubated

Caelen extubated last night and is on hi flow oxygen. His sats are still in the low 70's but he's not a blueberry anymore, and he's de-puffed by half! Literally, it's a night and day difference. He peed out almost a liter last night.

Aside from tweaking of meds, Caelen is doing well today. Much more comfortable. The plan is slowly wean his hi flow oxygen to regular oxygen and then off. His lungs are still wet so we have a lot of work to do on them. But hey, he's extubated!!!

Dr Spray stopped by and checked on him. I guess he's the one that made the call to take down fontan immediately last week. Did I mention that he was in China last week? He was following Caelen and a few others daily. I love this man. He also said not to give up on the fontan yet. Caelen's lungs need to get bigger and stronger before we look at anything in the future. But he said don't give up yet.
Again, I love this man.

Please say extra prayers for our new friend George today. He's in the OR now and needs all the prayers he can get. Say a prayer for his mom Julie too. She's here alone for the time being until family comes back from Minneapolis, and she's dealing with things none of us would ever want to.

Thank you :)
Katye

Extubation on hold to fix the PICC line

He was scheduled for extubation today but then his PICC line started leaking. So we are waiting to go to IR to get it fixed, and he has to be intubated for the sedation. Luckily it's not general anesthesia this time.

So, hopefully tomorrow is extubation. In the meantime, we're just hanging out and watching Caelen sleep, watching the monitors, lol.

Thank you again for the prayers, hopefully I'll have something more exciting to report tomorrow.

Last but not least, a big thank you to he Shearer's for the care package that arrived today. I can't wait to spray Martin with silly string next time he snores ;)

It's just cosmetic

I was just asking the nurse why she thinks Caelen's face looks blue, and she said its probably the shunted blood. He just has so much de-oxygenated blood right now, that until that shunt totally clots off he's going to be on the bluer side. She said, "structurally, he's fine." So I laughed and said, it's just cosmetic, kind of like a retaining wall with a big crack. Structurally, it's fine, but unnerving to see.

My sense of humor is getting more pathetic, I know.

But you're here for a Caelen update, so on to it. He is still having these random desaturating moments, and at times we have to go back up on the oxygen. He'll do really well on lower vent settings, well enough to extubate, and then there's an episode and the tube has to stay in. The good news is that the junk coming out of his lungs is a lot thinner and stuff that he can cough up once extubated. So this means his lungs are healing from the plastic bronchitis. But there's no data to show just how long it will take to clear. Kind of like his chronic lung disease. At some point, he'll be discharged home but his lungs will still be healing.

And for those that have been asking, discharge and timing are not conversations anyone has. We take each day as they come. Caelen has taught us that he doesn't do anything according to plan, so the team doesn't give us time frames on anything.

He's being kept sedated most of the day because he fights when awake and tries to pull out his breathing tube. But he isn't paralyzed, so he still wakes appropriately with care. I'm sure we've set ourselves up for another wean, but we've done it before and we can do it again.

So that's it. We're sitting around staring at Caelen and monitors and I've read all of his books too many times to count. I'm sure he's having crazy trippy halloween dreams.

Thanks to all for the care packages and books. Please keep praying.

Love,
Katye

Mini crisis averted

Caelen's o2 sats are still sitting in the low 70's and at times, upper 60's. The docs were worried that he still has leakage around the shunt placed to "block" the Fontan and that is what is causing the lower sats. They did an echo and found significant leakage. The good news is we have an answer and its fixable. The mini crisis on my end was how they were going to fix it.

There's 2 main ways to address this:
1. Time. Give Caelen more time to clot off the flow and block it.
2. Go back to the OR and open his chest to completely take down the Fontan.

Thankfully, Dr Rome, the cath Dr answered his phone on a Saturday, and he said that he expected this because Caelen left the cath lab with leakage, and it can take up to 6 weeks to clot off. Surgery is not off the table, but we're not close to that option now. Dr Rome felt that Caelen just needs time and that this wont affect him being extubated or going home.

Now don't go getting excited about the home word yet. We have some work to do on his lungs and rehabbing them. But once again, Caelen has proven that time is his friend and that's what he needs. And that's ok. We're only 1 month in and compared to the Glenn, well, the first Glenn, one month is easy. Whatever it takes to get my beautiful angel back home, then that's what we'll do.

On a side note, I met a new heart mom the other day and we've exchanged numbers. So I'm making new friends here and finding people to laugh with. It's also a big bonus that she likes wine ;) So I'm sure we'll find a nite when our kids fall asleep and sneak out for a glass. Her son's name is George and like Caelen, he's had a rough go of it. So if you wouldn't mind adding George to your prayer list, I'd be very appreciative. I haven't met him yet, but his mom Julie says he's beautiful. In fact, she tells him that God spent so much time on his face that he ran out of time for his heart. Lol!!! Judging by how pretty his parents are, I'd guess he really is a good looking boy. I love that through all of this, she maintains her sense of humor.

Ok, time to sign off. As always, thanks for your continued love, support and prayers. Please pray for the shunt to clot off and Caelen's sats to improve, and please pray for his puffiness to go away. Or in general, a full, miraculous healing :)

Love,
Katye

Post cath/Glenn-tan

Glenn-tan. I'm stealing this from my heart friend Lori who also has a daughter with HLHS, and she is a Fontan take down too. She calls Rosie a Glenn-tan. So that's our new word.

Caelen had a decent night. He was sleeping comfortably until around 4 and then decided he wasn't having all of this intubation, chest tubes, IV's, etc. They gave him a lot of rescue doses of sedatives and decided to add another drip to keep him calm. It took a while to kick in and he gave the morning nurses quite a workout.

The plan for today is to just let him heal and rest. His oxygen is a little low, 73, but his blood gasses are good and he's even slightly over ventilated. This could be from the plastic bronchitis still, but he is being aggressively suctioned and they are pulling a lot of mucus and junk out of his lungs. It could also be from the trauma and drama of yesterday. So rest today is the best thing for him.

I wanted to share a story with you from last night. As we were waiting for the 2nd round of the cath and getting very mad at God, a father and his 5 year old daughter (who is a patient) walked by and said, "you look like you need a friend." He then went on to tell us how the doctors told him that his daughter Emma wouldn't make it, and when she did, that she'd never walk or talk. We've seen her walking the halls for days now and let me tell you, she can walk and talk. She told us funny stories and then went back to her room to rest. Then they came back again with 2 plastic spider rings, one for mom and one for me. Emma told us that they are for good luck. So mom and I have been wearing them since last night. But Emma also sat and told us 10 jokes. And she counted each one. They were exactly what we needed at that very moment in time.

Just as we were getting mad and cursing God for letting this happen to Caelen, he sent 2 angels to come and take care of us. It was at that point that I knew that Caelen would be ok. So although we can't understand God's plan for Caelen, I know He has one. I realize now that it's not my job to question God. My job is to be Caelen's mom and do the best that I can. God will take care of the rest.

Thanks again for the prayers. Caelen is still critical, but I believe that he will overcome this. Please keep praying.

Love,
Katye

He's back

It was a long double process. Basically the plug that they used to occlude the fontan wasn't enough to block the blood flow, so they put in 20 platinum coils to block it and block off the fontan.

The good news is he's back in his room and we are seeing him for the first time since 2:00 pm. He's puffy but that's to be expected. He still has to recover now from this surgery, so here we go again.

The downside is that Caelen is most likely not a candidate to try the Fontan again. So heart transplant is going to be the next option. But that's not in our near future. So for right now, Caelen made it past this hurdle and I couldn't be happier.

Thank you all and please keep praying.

Love,
Katye

Coiling

The docs are still working. They are coiling collaterals. That's all we know right now.

Cath - just got access

They just got access 20 minutes ago. So it's going to be another hour before we get an update. Please pray.

Cath not finished

The fellow just came out to tell us that the cath was over, but Caelen's oxygen sats were too low, so they are thinking that the stint they placed may have shifted, may not be big enough, or something else. They probably have to to go back in, which means getting set up and gaining access again. So it's going to be a while before we hear anything.

We did hear that his blood pressure was good and that he got 2 new pigtail chest tubes for pleural effusions.

Please keep praying, I think it's going to be a long night.

Taking down the Fontan tomorrow

So Caelen doesn't like his Fontan. Thats the bottom line and that sucks!

The plastic bronchitis is a direct result of the Fontan and a clear indicator that the Fontan just isn't working for him. It's also the last straw I think. So Caelen is going to the cath lab tomorrow around 1:30 to have his Fontan functionally taken down. They will be occluding between the Fontan and the SVC and stenting open the fenestration. Functionally making him a Glenn again. Blood flow from the IVC will shunt through the stented fenestration to the body. The SVC will still feed the lungs.

Dr Rome will be doing the cath and he is the head of the cath team. There are certainly risks associated, blood clotting being a big one, but it is safer to do this via cath lab then back in the OR. They will have to go thru hepatic access though, which means making an incision through his side and going thru his liver. This is the only way to access the Fontan in the manner they need to since his femoral access is all occluded.

Please keep praying for Caelen. This is obviously not what we wanted, but right now it's our only option. Caelen can potentially go several more years as a Glenn again before we have to reattempt the Fontan. Please also pray that he stays stable tonight. The plastic bronchitis is causing major problems right now and the casts are blocking airways. Please pray for the bronchitis to heal and his lungs to heal.

Thank you,
Katye

Plastic Bronchitis

Caelen had a bad night again. He was struggling to breathe and had to be suctioned several times. In that process, they pulled out mucus casts and pretty much knew that it was plastic bronchitis. You can google it. He has been reintubated and is breathing comfortably now, but he's not out of the woods. The team is still in his room trying to get a blood pressure and they are going to place another arterial line.

His blood gas was not acid odic but his co2 was high. So it's going to be another roller coaster day.

Please pray that Caelen overcomes this latest hurdle unscathed. Please pray for the team to clear up the plastic bronchitis, and please pray for his lungs to heal and his heart to accept the Fontan.

Bye bye chest tubes, hello oxygen

We started the day with a major plus in getting both chest tubes out today. Woo hoo!! Stay away drainage.

But we also went back on oxygen last night because Caelen was working too hard to breathe. He's only on 1 liter of o2, and he probably doesn't need that much, but until his lungs dry out and he can fully inflate them with deep breaths, I don't want him to struggle. So oxygen it is for right now.

The docs want Caelen up and out of bed as much as he can now that the chest tubes are out, and we took 2 rides today in the wagon, and 2 walks in the halls. The only thing that's really going to help the lungs now is to get up and get moving. So each day we are hoping that Caelen will get a little stronger so we can stay out of bed longer.

And on a mixed note, our new friends The Millers, started their drive back to Alabama today. I say mixed because I am so excited that they are finally going home for the first time in 2 months, but I'm sad because I really enjoyed spending time with their beautiful family and getting to know each of them. Their 2 daughters gave me many a good laughs and big smiles which were always exactly what I needed. Not to mention giant chokeholds from Carys. I am sad to see my new friends go, but I am overjoyed for this new time for them together on the "outside." Please pray that they have safe travels back to Alabama, and that their time between the 1st surgery and the Glenn in a few months is healthy and uneventful.

Thank you all again for the wonderful messages of support and prayers. Thanks for helping me see the sunny side when I sometimes can't. And thanks to all who send care packages and love.

Katye

Hanging out

We're still just hanging out in the ICU. No big changes this weekend, just a few minor ones. Caelen's heart rate and respiratory rate are increased and the docs aren't sure why. They did another echo to look at the fluid around his heart and said it hasn't increased and its not the culprit. His lungs are still wet and that could be what's contributing to the rapid breathing. He's also coming down with something, I hope it's just a cold. He has been downright cranky the last few days but perked up this afternoon.

So overall we're really just hanging out waiting for the chest tubes to stop draining. They put out less than 3 ounces yesterday which is a huge improvement. So hopefully the effusions will stop soon. I'd love to get these chest tubes out so he can get up more and be more comfortable.

Praying that the docs can figure out this heart rate and respiratory rate thing soon.

Love,
Katye

No sleep

Sorry I didn't update yesterday. Caelen has been awake the last 3 nights and I'm exhausted. My eyes are closing as I'm typing. I may leave tonight and go back to Ronald McDonald so I can sleep.

Anyway, Caelen is doing well besides the not sleeping. He is happier and transitioning back to feeds again. Speaking of, he developed chylis again which is a leakage in his lymphatic system. (Google chylothorax). It doesn't really show up until feeds get restarted. This happened after the Glenn too and we had to sit and wait out the drainage in the ICU. Same story here. He's been switched over to a special formula that greatly reduces the fat in his minimal diet. The hope is that it will lessen the chylis and chest tube leakage.

And Speaking of leakage, the chest tubes were putting out 2 liters a day a week ago, we finally hit 1 liter a few days ago, and yesterday it was only a half a liter. It's still a lot, but good progress is being made. We just hope that the chylis doesn't increase with the new formula.

Caelen is getting out of bed more and and sitting in the red wagon that is now on loan in our room. He watches movies in it and its great for his neck and trunk support. He's also talking a lot more and laughing a lot. So it's the little things like his personality coming back that make the sleep deprivation more tolerable. Thank goodness for my mom who has been on Caelen duty the last 2 days while I basically drag. She's been a huge help with entertaining and caring for Caelen.

That's it for now. We are holding the course and my little monster is back. I can't wait until he starts running the halls and terrorizing the nurses. Thank you again for the prayers, please keep praying for a full recovery and healing.

Lastly, a big thanks to Caelen's wonderful teachers, Mrs Ellen, Mrs Tammy and Mrs Mindy for the giant care packages that arrived today. Can't wait to dig in and play.

Love,
Katye

More lines gone

Happy Hump Day everyone! Caelen is continuing to progress a little more each day. Today he got his IJ line (big central catheter) out of his neck and tomorrow he is going to get his art line (arterial access for blood draws, pressures) out. He ate 6 bites of applesauce for me twice today and went for a bigger walk and longer wagon ride to the play room. He is still draining, but it seems like each day it slows a little more.

Last night during bath we took off his oxygen/nitric/hi flow cannula and he has maintained his sats since. It's so nice to see his little face without he oxygen. We're hoping that he will continue to maintain this :)

So we're happy with the progress and its still only 1:30.

Thanks again for all the wonderful messages, comments and likes, support and prayers. Caelen truly is a miracle and the best blessing I have ever received.

Love,
Katye

Post cath

There hasn't really been any changes today, except slight lowering of drainage, which is good. Our cardiologist came in today and said that they were going to give Caelen more time to drain and heal. Which is what we wanted. They are lowering his esmolol with a goal of weaning it off overnight. They will instead start a different type of beta blocker that can go they his stomach instead of IV. They have stopped the heparin and are stopping the bivalirudin overnight too. Instead he will be going back on lovenox twice daily injections. That kinda sucks. I know that Caelen needs it, but the thought of the injections again in a now 3 year old give me anxiety.

On the positive side, Caelen walked more today and went for a wagon ride. He's laughed a few times too. The wagon is in our room, so we can use it each day. It takes a team to walk the halls, but it was so amazing to get hin out of his room.

So each day we are making a little bit of progress, and that's fine by me. We still need the effusions to stop, he's down from draining 2 liters a day one week ago to a little over 1 liter per day. It would be better if it was zero, but I know that day will come.

Thanks again for all of the prayers. And thanks to the Millers for lunchtime fun. Baby Macsen looks amazing and the girls had Kelly and I laughing harder than we have in 2 weeks.

Love,
Katye

Cath is over

He's back and did fine. The dr was able to go thru his neck and no intervention was needed. The fenestration is open and has good flow and the fontan pressures were only slightly elevated. Physiologically there isn't anything wrong. So we're at a loss for answers.

I think Caelen just needs more time. His effusions lasted 9 weeks after the Glenn, not that I want that to happen again, but I really think he just needs more time.

Please pray, and please ask for these damn effusions to stop.

Thanks for all of your prayers for safety and healing for Caelen. We still need them.

Love,
Katye

In cath

Caelen just went into the cath lab. The Dr said it should take about 3 hours. So once I have an update I'll post.

Thank you for your prayers.

Love,
Katye

Cath lab today

The team hasn't rounded yet but we are still 3rd case for the cath lab. They still think that the fenestration is closed and they need to open it to stop the effusions. He shouldn't still be draining this much this far out post op. I'll update once he goes into cath.

Please pray that the team can get easy access and that there are no complications. The threat of having to go thru the liver is still here, as well as clotting and difficulty reaching the fenestration.

Thank you. Love,
Katye

1 chest tube down

Caelen got his original chest tube from the fontan out this morning and didn't even flinch. He still has the 2 side chest tubes (pigtails) that are draining quite a bit. Dr Spray came in this morning to check on Caelen (isn't he amazing) and said that he is sending Caelen back to cath lab tomorrow because he thinks Caelens fenestration closed, and if so, he needs to open it. If it is closed, that would explain the excess drainage.

Obviously we want anything that will help Caelen heal, but I hate that he has to go back under anesthesia and intubation again. Caelens vocal cords are swollen and he can't swallow water and juice right now because he is aspirating. So I'm scared of losing ground on the progress we've made with feeding and drinking. But on the bright side, he did take 5 bites of applesauce eagerly this morning, so that was excellent to watch. Once his stomach starts getting more food thru the tube, then we can try more solids.

In the meantime, Caelen has taken more steps today and we are working towards more PT each day. Caelen is talking more and expressing more as the meds are coming off.

Thank you again and please pray for these damn effusions to stop. We really don't want to go back to the OR again.

Love,
Katye

Caelen laughed!!!!

The day was pretty much the same until the afternoon. Caelen got out of bed again and walked twice, back and forth to the couch to sit with Mimi and watch a movie. After that he really started to kind of "wake up." He started talking more and using his arms and stomach muscles more to sit up.

Then we had a visit from one of our new heart friends, Aaron Miller (macsenthegrayt.blogspot.com) and he was telling us a story from earlier today about how his 6 yr old daughter accidentally got hand sanitizer in her eye. Next thing you know, Caelen is laughing!!! And he kept laughing, so we started laughing, and jumping for joy. Caelen is back!! We are all so excited I was grabbing staff from the halls :)

He's also becoming more ornery when the nurses mess with him. So again, more signs that Caelen is back :)

Thank you all for your prayers. They are working. There's still a lot of work to do with those damn effusions though, so please keep praying.

Also, I mentioned our friend Aaron earlier. He has a beautiful wife named Alex, 2 adorable little girls named Carys and Kismet, and their newest addition, Macsen. He was born here 2 weeks ago yesterday, had his open heart surgery last week and they are scheduled for discharge home tomorrow! Way to go Macsen. They are such a wonderful family and I feel very blessed to have met them in our short time here. Macsen will still need 2 more surgeries, like Caelen, so please add their wonderful family to your prayer list.

Thank you to all of our prayer warriors and angels.

Love,
Katye

Still steady

Not much has changed overnight. Which is good. Caelen's chest tubes are still draining a lot. I wish the effusions would stop.

I did get to hold him this morning and we are going to have him try for more steps this afternoon. He's talking a little more as the narcotics are weaning down. It's nice to hear his little voice but he is more agitated. So the nurse is trying to control the agitation with Tylenol round the clock and sedatives when needed. We really need to get him off the drugs safely.

His lungs are still wet, but slowly healing. As we get him up more, they should start to heal a little faster.

Other than that its just slow and steady. Thank you again for your prayers. We ask for continued healing of his heart and lungs and for the effusions to stop.

Love,
Katye

Steady as he goes

Caelen is steadily showing signs of improvement. He looks a lot better today and even got out of bed and took 2 much assisted steps, and then I got to hold him for an hour :) He has been more awake and alert today and even said a few words, including, I wanna go, I wanna walk, I want juice and all done!

He still has a lot of chest tube drainage but the team still seems happy overall. I think the biggest thing is that Caelen looks and feels better. We are really hoping that his chest tube drainage will slow down shortly here so he can start making a little more progress.

Thank you to all of our family and friends who have visited in this last week and a half. And again, thank you all for your continued prayers, love and support.

Love,
Katye

Updates

The team just finished rounding, it's been a busy day around here, but happy to report that it wasn't up holding up the rounds this time :)

Caelen is starting to show improvement. His chest drainage is slowing, although it is still a lot. His lungs are still wet, but getting a little better. He's even going to start 5 cc of formula an hour today with the hopes of adding more. The esmolol is helping his heart to slow and fill and has been dialed back a little too.

I think overall the team is happy to see some progress finally and we're all crossing fingers that Caelen is turning the corner. Although they reminded me that this is a big corner, but still, I'll take it. Dr Spray has come by twice this morning to check on him and the staff has said it's almost unheard of for Dr Spray to come so often. Clearly he is invested in Caelen and we couldn't be happier with the care that Caelen is receiving from everyone here.

Speaking of Spray, he wants to hold off on any surgical decisions over the weekend and see if Caelen can continue this upward trend. That makes all of us happy. Caelen is still very sick, but I really do believe that he will overcome this and come back fighting. Prayers are working and prayers are healing, so please continue. Knowing how many people care for my son and care for our family is overwhelming and beautiful. Thank you for lifting Caelen up.

Love,
Katye

Fontan status

Caelen is having trouble accepting his fontan. It's almost like he is rejecting it. His heart is pumping too hard and too fast and not filling enough. He also has a lot of effusions that are dumping massive amounts of fluids from his chest. It's always better out than in, but he's so dehydrated. The docs are replacing every drop that comes out, plus more, but they can't seem to catch up. The dehydration isn't helping his heart rate.

Dr Spray is involved in every step and thinks that if we can't control the systems, then he wants to take Caelen back to the OR and take down the fontan and restore him to a Glenn, either tomorrow or Friday.

Please pray for his heart to accept the fontan and slow down and fill to a normal rate, the effusions to stop, his lungs to heal and for Caelen to heal and recover fully so he can come home. Thank you all for the prayers and messages. Although I can't respond to all of them, I am reading them.

Withdrawal

Caelen sent me over the edge tonight. Thought I was gonna have a heart attack. Around 4:00 his heart rate started shooting up to the 160's, then 180's, then 200's!!! X-ray, EKG and echo were good, thank God. It was withdrawal with dehydration. But it took almost 5 hours to figure that out. The team gave fluids and added back the meds and he settled out. He also has a fever. So they added a 2nd antibiotic since he still has the UTI and that med isn't covering the fever.

When the docs couldn't figure things out, they were worried about seizures. So thank God they pretty much ruled that out.

Gotta say, it crushed my heart to see him so miserable tonight. I just don't have the reserves right now to handle another "event."

So tonight I ask that you pray for Caelens team to figure out his withdrawal and wean plan. For his heart rate, pressure and fluids to stabilize, and as always, for his lungs to heal. There is still a possibility of extubating tomorrow.

Love,
Katye

Bye Bye ECMO

We just met with Dr Spray and he said that Caelen did great coming off ECMO. He did not have to close the fenestration either. He wants to wean the diuretics and start waking Caelen today, and he'd even like to extubate to oxygen tomorrow! He said Caelen needs to start getting up abd walking around once he is extubated. Dr Spray was very hopeful that Caelen will be just fine.

Time to take a breath.

Caelen's lungs are still crappy though, so we need to work on them and continue to dry them out. Thank you to all for the prayers, please keep working your miracles. I cannot thank each and every one of you enough. From the bottom of my heart, THANK YOU!

Back in the OR

Caelen is in the OR now and Dr Spray is taking him off ECMO. He may need to close the fenestration if Caelen's sats aren't high enough. Should be about another hour and a half. As soon as I am able to, I'll update.

Please pray that Caelen successfully comes off ECMO and his lungs heal. Please also pray that the team gets more access for IV's.

Sunday already

Can't believe it's Sunday. Where do the days go?

Caelen had another good night. Fighting sedation again, so it's been switched around a bit. He did mouth to me today that he wants to go :(
Luckily, the morphine, dex and versed that he is on help him settle back down again quickly and he doesn't remember waking up.

His viral cultures are negative, yay! But his UTI is still present, so he is going to stay on the antibiotics. Also, his X-ray looks better today and his lungs are starting to dry out. Dr Spray came by this morning and wants to take Caelen to the OR tomorrow afternoon to take him off ECMO, pending continued progress. So God's angels need to keep drying out his lungs with their wings.

I think that's it for today. He's still sleeping and waking appropriately when needed. We are trying to keep it quiet for the most part and let him rest. Too much stimulation in the room wakes him and then we get into the mess of adding more sedation. So imagine how hard my dad is working to keep his voice down and even just not talk ;)

Thanks again for the prayers, love from all of us!

Good night, wet lungs

Caelen had another good night, however he has been waking a lot this morning and even sat up and tried to pull out his chest tubes. This is obviously very bad. However, from a neuro standpoint, this is positive. The attending didn't seem to share my excitement. Clearly he is under sedated so the plan today is to go up on sedation so he can rest and stop fighting.

Also, the diuretics have switched from scheduled doses to a constant drip. The team is also going to decrease his maintenance fluids and increase the diuretics to get more fluid off his lungs. His X-ray wasn't as improved as we'd hoped, so the plan this weekend is to just work on his lungs and diurese him as safely as we can without dehydrating him intervascularly.

If you are looking for specifics to pray for, please pray for his lungs to dry out, open back up and heal. I'm stealing this from one of my good heart friends Lori, "we need the tiniest angels with the biggest wings to get into his lungs and dry them out."

Lastly, we are going onto contact isolation (glove, gown, mask) because a respiratory sample was sent to the lab. Caelen's bacterial cultures are clean, except for a urinary tract infection, and he's getting antibiotics for that. But the viral culture wasn't done until today and won't be back for 24-48 hours, so this is why we have to be on contact isolation until the results are in. We are hoping that it comes back clean. But in the meantime, visitors are severely limited.

Thanks for your continued support and prayers for Caelen.

I guess the mob is getting antsy for an update ;)
Caelen had a good and non eventful night. Since it is the start of the weekend, the team is going to keep him on ECMO for now and give the lungs time to heal. Never good to try big changes on weekends. But Caelen did pass his bedside neuro exam this morning and their is no emergent need to get the bedside CT scan. He will still need it to check for signs of seizure, stroke and bleeding, but right now signs point to no major damage from the "event". Caelen wakes to our voices and can move all extremities, he even mouthed "more water" this morning, which made me burst into tears. I am very encouraged by his progress. He is still critical, and we have a journey, but he is stable. Thank you for the hundreds of messages in the last few days. They have been getting us trough this scary time. Please keep praying for Caelen

Back from OR and cath lab

Caelen did great in both the OR and the cath lab. Dr Spray moved the ECMO cannula from his neck to his chest without incident, and even closed his chest too, which is unusual, but cool, because I really don't want to look at his open chest. The reason he didn't do it in the chest first is because when he came in at 4 am, Caelen desperately needed oxygen and the neck was the fastest and "easiest" way to do that, thus stabilizing him and readying him for the OR and cath.

He also checked out the Fontan and said there are no issues that he could visually see. So off Caelen went to the cath lab where they found nothing to correct. His Fontan circulation and fenestration are working perfect, but he does have too much flow going across the fenestration, mixing in too much blue blood and causing lower sats. The reason he has too much flow across the fenestration is because of the high pressures in his lungs.

So what this means is that the lungs got overloaded with fluid and he crashed because of fluid, but not because of physiology. Boo that there wasn't anything to "fix", but good because his physiology is fine. So right now he is stable, and the goal is to keep him on ECMO for the next 24-48 hrs, diurese him to get the fluid off his lungs and just allow his lungs to heal.

Thank you, thank you, thank you for all of the amazing prayers today. What a difference a day makes. Please keep praying for Caelen's lungs to heal.

ECMO

Caelen has had a very bad night. He desaturated very quickly last night and was re intubated and placed on ECMO, which is a heart and lung bypass machine. It is doing all the work for Caelen's lungs and heart. The Dr believes that Caelen has a pulmonary artery that has popped off from the fontan pressure and is leaking blood. So his lungs aren't getting enough oxygen. His lungs are wet and absorbing all of the fluids being pushed to combat the dehydration. This is bad. This is also why they are collapsing.

He is currently stable, but still very, very sick. The goal today is to get him into the cath lab and find out what is happening. He has no non-invasive access left, so the team has to look at accessing him through alternative surgical methods.

Please keep paying. Last night was very scary and we came very close to losing him. But he is a fighter and I believe in God and the power of prayer.

Thank you.

Post op day 1

Caelen had a rough night, and a roller coaster day so far, but he's ok. The nurse and medical team keep telling us that it is to be expected, and they aren't worried. It's hard to watch him so miserable, but again, it is to be expected. Still, I don't like it. They don't want to keep sedating him if they don't have to. That being said, they have had to sedate him a few times today when he has woken and gotten very agitated. He tries to pull of the oxygen and tries to pull at his lines.

But, he has also woken today at times and been good. He is talking a little when he wakes, either saying that he wants water, or he's watching Monsters. He also says that he's done and he wants to go. So, appropriate neural responses for a toddler post op. We have let him drink from his sippy cup a few times, but he tries to guzzle the 2 ounces he's allowed over an hour. So it's best to try and keep him asleep.

It's still a balancing act and our nurse is getting her workout. Please keep Caelen in your prayers. Specifically that his heart rate, blood pressure, respiratory rate and oxygen sats return to normal.

Thank you

CICU

Caelen did great in surgery and Dr Spray said he didn't encounter anything unusual, so the Fontan was as expected and uneventful. Yay!

He came back to CICU around 3:00, but we didn't get in to see him until about 5:30 because he has a pneumothorax (air in his chest cavity). So they were taking X-rays and making sure he was safe to extubate, which he did. Just to give him support until the air drains from his chest cavity (the air is pushing against the right lung and keeping it from fully inflating), he has an oxygen mask on and being fed 100% pure oxygen.

His sats were a little rocky in the beginning, but they are steadily improving. His o2 is in the upper 80's and low 90's which is awesome. We've never seen numbers this high. Now granted, he is still getting oxygen support, but they have been steadily increasing from the mid to upper 70's when we came in. His chest tube drainage is on par and slowing a bit, as well as thinning. All good things. His blood pressure is bouncing a little bit too, but the nurses are staying on top of it.

So all in all, Caelen is doing as expected. The next 48 hours can be bumpy as the medical team adjusts meds and treatment and he wakes up. The goal is to keep him calm and hopefully asleep right now so he doesn't pull at his lines anymore.

We are hoping for a calm and mostly peaceful night for Caelen so he can rest. Thank you to all for so, so very many wonderful messages today. We truly appreciate all of the support and prayers for our miracle boy.

Love,
Katye, Martin and Caelen

Coming off bypass

So far so good. The nurse just told us that he is warming up back to core temperature and getting ready to come off bypass. The hard part is over.

He will stay in the OR about another hour so the team can keep an eye on him and make sure he is adjusting to his new repair, and ensure that everything is normal. Once he comes back from the OR and we meet with the surgeon, we'll update again.

In surgery

The nurse told us that they only started the actual surgery about 30 min ago. It took awhile to get access. Next update in an hour or so.

Anesthesia prep

Caelen is back in the OR being prepped by the anesthesia team. We are upstairs waiting to meet with Dr Spray, and then he will go down to the OR and start. Once he starts, it should be about 4 hours. Could be less, but the nurse advised 4 hours is a good ballpark. Once we know more, we'll update.

Thank you for your prayers.

Surgery Date

Just go the date, it will be September 25 with pre-op on the 24.

Also, we saw our local cardiologist today and she confirmed the timing of surgery, saying now that he is primed and optimized, there is no benefit in waiting. She did an echo and his heart function is good, especially considering that he is still a stage 2 repair. Normally the Fontan is scheduled between 18-24 months of age. So at 3 yrs, we are fortunate that his heart is holding out.

Well, time to start making serious arrangements. Thank you all again for your love and support. Please continue to keep Caelen in your prayers.

Love,

Katye

Still no date

We learned today that when the cath Dr and our cardiologist told us last week that surgery would be in 2-4 weeks, they didn't realize that our surgeon, Dr Tom Spray was booked until thanksgiving. So now the scheduler has to get together with Dr Spray and his team to figure out how to squeeze us in. It's made even more frustrating because it feels a little like we rushed to get the cath, were told 2-4 weeks, and now Caelen really needs the surgery because of the collaterals. So waiting around is a poor option because:

1. Caelen is now working harder to breathe and can't run around.
2. He is in isolation mode again to prevent germs. So we're bored.
3. He can't go to school and risk germs and infections.

So hang in there with me and as soon as we have confirmation, I'll post an update.

Love,

Katye

No surgery date yet

Sorry to not post, I was hoping to wait on a surgery date to update everyone but I think I've worried a few of you, lol.

Should be tomorrow, I emailed and called today only to find out that I need to wait until tomorrow.

On a side note, we got a better understanding of Caelen's desaturation. I reached out to the local cardiologist that has been seeing us since pregnancy, and she explained that Caelen was clearly relying on those collaterals that were plugged and coiled for an extra boost. So now that he doesn't have them, he isn't getting as much oxygenated blood to his lungs as before, hence the cyanosis. So this is our new normal until the Fontan. She also explained that collaterals and the Fontan don't get along. So they needed to go, and we need to have the surgery soon. Now if only CHOP would just give me a date.

Lastly, thank you all again for your prayers and support. I'm so appreciative for all of the loving emails and messages that I've received over the last few days. Sorry that I seemed down, I guess I needed to put all of my fears out there so I could let them go.

I am much more hopeful going into this surgery than the last, and Caelen is so much stronger. He's also got a few more angels in Heaven this go round watching out for him, including both my grandmothers now. So I know that with the new additions up there, we are in good shape.

Again, thank you all and hopefully I'll have a date for everyone tomorrow.

Love,
Katye

This moment for life

I'm clearly not a Nikki Minaj fan, at all, but I do like her song title and hook. Kinda poignant, this moment for life.

I know whats coming. Caelen isn't doing as well after the cath as he was before the cath. He is tiring faster, which is weird because he is supposed to be stronger. He is having more cyanotic episodes where he turns blue and Martin and I need to keep him calm. Caelen recovers quickly, but this is different from pre-cath.

His cardiologist isn't concerned, but I am. Some nagging suspicion that all isn't well. He said that we should get the call Tuesday regarding our surgery date, which should be in the next 1-3 weeks.

How do you prepare yourself for what is about to come? I don't have an overwhelming feeling of dread, which is good. But I'm not naive either. I pray that the fontan, and all that goes with it is a success. I pray that Caelen does not have pleural effusions and chest drainage problems.

I pray that Caelen has an easy and straightforward surgery and the easiest of recoveries.

Overall, I pray that Caelen gets a break. I know that it's a lot to ask for, but these are my prayers:

Successful surgery
No complications
Fast and full recovery

That's my life in a nutshell. I want my son to live. I want him to finally catch a break and to get a chance at a normal life. So if you are wondering what to pray for, this is it.

Thank you to all of those who keep praying for us, please don't stop. Your prayers are miracles and got us to where we are.

Cath update - Cardiology

Dr Rychik came in to talk to us and said he was really pleased with Caelen and his cath results. He wants to meet with his team, including the surgeon, Dr Spray, and schedule his Fontan. He is thinking 2-4 weeks. The reason that he wants to do the surgery now is because Caelen has been optimized in the cath lab with the plugging and coiling of collaterals, and in theory, this will help minimize the risk of pleural effusions (fluid in the chest cavity) and chest drainage. Caelen had a major problem with effusions after the last surgery, so this is as good a time as ever to do the Fontan.

I have mixed feelings about the Fontan now because, well hell, who wants to go through another hospitalization? But doing it now gets it over with and stops it hanging over our shoulders.

So we'll wait for a date and in the meantime, go back to isolation mode. Stinks that Caelen can't start school now until after the surgery, but that's a small price to pay for his health.

Here's a pic of Caelen in recovery playing with gabba on his iPad and watching cars on the tv above his head. He's doing really well and can get up in an hour and a half. After the cath he has to lay flat for 6 hours, but he's drinking a lot of water which is good. We're still waiting on the formula lab to bring up his food, seems like no matter the hospital, some things never change. Lol.