28 Days of Hearts - Apollo's Story

Apollo is featured on 28 Days of Hearts like Magnus was last year. I just love our story! 

http://www.28daysofhearts.com/2018/02/day-26-apollo.html

Post Op Day 10 - Homeward Bound!

10:30PM

No words, just pure elation! ❤️❤️❤️❤️❤️

2PM

You know what it means when we take this pic...we’re going HOME because my amazing son is BOSTON STRONG!!!! 

Post Op Day 9

Mr. Sleepy Head woke up late again this morning at 9:30am! He has so much catching up to do from a week of interrupted night after night. We packed, I mean, I packed up our room :), to make the move to the other patient house. We found our little friend and his parents in the kitchen and had breakfast together. The party then shifted to the playroom where the boys happily parallel played with mini Thomas trains and we chatted away. 

After parting ways, we made the move to the Yawkey Inn and grabbed a long lunch together. We planned on a matinee movie date but I could see a nap was very much needed so we stayed back and little A zonked out for almost 3 hours. And I can’t help myself but take pics of my sweet guy sleeping!

Once he woke up, we Uber’d it to Target to get some lil gifts for our friend since tomorrow is his big day. We went specifically for a shirt we bought Apollo yesterday which he’ll wear tomorrow. It’s a vibrant tiger with “Be Brave” on it. They didn’t have any more (and I was mad at myself for not thinking to get it yesterday) but we found a cool Superman shirt.

A couple blocks of walking landed us at the movie theatre right in time, We intended to see Coco after Apollo saw the trailer at lunchtime but he changed his tune and chose Paddington 2 at the ticket counter. The first one was cute so I didn’t mind a bit. We searched everywhere for a poster or a big display but there was none to be found. I couldn’t believe it, especially since it only had one remaining ticket available! It was a great movie which we both really enjoyed.

A quick ride back to the house, some playroom time, and snuggles in bed finished out the day. Oh yeah, remember those inanimate object families...here’s another Apollo was quite proud of - they were going to Disney World. :)

And most importantly, I heard back from Dr. Marx’s PA that they were able to squeeze us in to his clinic tomorrow! Pending a clear chest xray and Dr. Marx’s blessing, we’ll be headed home tomorrow or Wednesday!! To say we’re ready is a huge understatement! Bring on all the Duffs!!

Post Op Day 8

My little buddy fell asleep while talking to me last night and didn’t wake up until 9:30am this morning. That has never, ever happened before! His little body has been through the biggest of battles and has so much healing to do. 

Daddy would’ve been so upset to wake up to this! It’s his first time doing it with this blanket.

We took it easy all morning long and headed out to an afternoon mass at Our Lady of Perpetual Help. I knew that’s exactly where we needed to be and it would be meaningful that it was our first place to visit outside of the hospital. I was emotional (as usual) as we celebrated Apollo’s healing and the strength and comfort God bestowed upon him. This is always the church we come to as I beg God to protect my sons and spare their little lives. I’m thankful I had the chance to visit, worship and praise Him with a grateful heart. We had a sweet interaction with one of the priests who wanted to pray for Apollo. He told us he was once a “blue baby” and his heart stopped as a child. He was proud that he is now an old man and said the same will be for our boy. Yep you guessed it, tears!

I didn’t want to push my warrior but we desperately needed to buy groceries since we didn’t plan on being here after discharge. We quickly took an Uber to Target, stocked up and headed back to our “home base” which is what some friends have lovingly named our patient house. It really is our home in Boston. We spent the evening with this wonderful family which was filled with great conversation and play between two little heart warriors from China. 

Ice cream time with friends (I edited Apollo’s little friend out for privacy but just know that he is adorable!).

We hope to find out tomorrow if we have a Tuesday or Thursday clinic appointment. And we will be moving to the other patient house in case we need to stay through the end of the week since they have availiabilty. It’s an inconvenience to move again but I’m so grateful for the opportunity and the house is quite a bit nicer too!

Post Op Day 7.5

9:30PM

I’m still trying to pick my jaw up from the ground! This boy - this itty bitty, teeny tiny, incredible boy - is my hero through and through. He knocked the socks off everyone who cared for him this past week. We’ve seen multiple nurses, clinical assistants, and NPs who still remember him by name from June. He’s left quite the lasting impression and he certainly did it again!

Posted with permission - Apollo wants everyone to see how strong he is with his scar.

We had a non-stop busy day, so much so that Mr. A-Man didn’t even get a nap. He had a chest X-ray right when we woke up and played with friends in the playroom while we waited for the results. A sweet, sweet family baked us cookies and brought them by. Their son is adopted from China too and will be having heart surgery on Tuesday. It was so nice to connect with more wonderful people who are walking the same path as us in life. 

The great and powerful Dr. Emani stopped by and was ready to set us free but the NP came in at the same time and relayed a message from Dr. Marx (who was at home sick) that he wanted us to stay one more night in the hospital and several more days in Boston. Despite Apollo having a bit of fluid in both of his lungs, Dr. Emani felt strongly that a discharge was in order. Hallelujah!! We waited for Dr. Marx to confirm it which he did but as long as we stay in town for a follow-up appointment in his clinic next week. Wah wah wah. We LOVE Dr. Marx but we were really hoping to be on the 5pm flight back home. Of course we are disappointed but I’m grateful his team is conservative and handles Apollo with caution and care. So we will be hanging out in the city we now consider our home-away-from-home.

The one, the only...

Apollo is feeling and looking better than ever! I’ve decided I’m not going to be able to process it all until we are home and removed from this survival mode. For now, I will dream about our airport reunion, and count ALL of our blessings and the minutes until we are Together At Last! 

5:30PM

Sorry for the delay but we’ve been a bit busy! Guess what?!!

Details to come later. :)

Post Op Day 7

8:30PM

What a difference a day makes! Little warrior man did a complete 180 and had the best day. So much so that they’ve started throwing around the big D word for us to break out of this joint! His team is switching him from IV meds to oral in preparation to leave. Woohoo! Since Apollo had some fluid in both lungs, he’s going to have another chest xray tomorrow morning and I’ll be holding my breath for the results. I feel like it’s his 135th xray since we’ve been here! 

Today involved a whole lot of playing. A lot of playing! We took a bit of a rest (for 10 minutes) before a NP needed to check him out and ruined his nap. Shucks! So we played more and had a dinner date in the cafeteria. My warrior has lost a pound since surgery and today was the first time he really ate close to his normal capacity. Dr. Emani came to visit after he was done in the OR and was quite pleased even after the little bump in the recovery road yesterday. After our discussion, I may even start dreaming of being all together again at home! Bring on the chaos!! 

He wanted everyone to see his pterodactyl which was previously a triceratops and a tyrannosaurus.

He’s stringing his Beads of the Heart which represent every poke, prod, xray, appointment, therapy, and other experiences here at the hospital. He’s earned every single one!

So there’s this boy and he’s completely stolen my heart!

If you could only see my antics behind the camera which elicit these priceless smiles...

My dinner date - cheers!

Pretty sure we’re gong to need to buy a plane ticket for his new mama and baby bears. They’re literally as big as him!

11AM

Quick update because someone wants to play, play, play! Apollo had a rough night but woke up feeling great!! His chest X-ray showed some pleural effusions but both are minor in his lungs. They upped his lasix and gave more IV diuretics to get ahead of it. He had to have a blood draw since his remaining IVs are too old and no longer good. It was the first time he didn’t cry (he usually screams!) which made Mama tear up with pride. He has come such a long way! He also had an early Echo so we’ll see how that looks. Our favorite child life specialist asked if he would like to be part of their “stories” and be a model for having an Echo. At first he was hesistant but then happily obliged when we explained he would help other children. Another proud moment! And he didn’t have to go back on oxygen overnight! We are celebrating everything wonderful because I was truly scared after last night. You all must’ve stormed heaven even more than before. Thank you!!

Showing off his prizes from the blood draw

Running into the playroom with his infamous slippers which are commented on nonstop. So funny!

Post Op Day 6

11PM

Well, we’re just going to pretend this afternoon didn’t happen! Overall, Apollo is still doing really well and far ahead of our expectations of where he’d be at this point...but he had a not-so-hot day and it got progressively worse. He started spiking a temp in the early evening and it continued until he fell asleep just now. Usually, he is as tough as nails and complains very little but he was really uncomfortable and in a lot of pain today. And the worst part, he said over and over, “help me Mommy, help me” and nothing I did helped. 

The team is trying to figure out what’s going on since his heart rate is really high too. They bumped up a chest X-ray from tomorrow morning til tonight so we’ll see what that shows us. Please continue to pray for our brave boy who is fighting as hard as he possibly can!

His people were able to get him to crack a bit of a smile, especially seeing his daddy again. 

And a side note - our little Juliette was proposed to like this today! Oh my heavens! The sweet (but forward!) fella got down on one knee and presented her with a paper ring. Her response, “I’m too young to pick now”. Amen to that, my wee one!

1PM

As many of you know when there are so many steps forward in the recovery process, there may be a little step backward along the way. Last night and this morning has been just that for our Apollo Wollo. First off, he’s still doing GREAT! He may have gone into a junctional rhythm in the middle of the night and his sats dropped a bit. He went back on low oxygen and had several EKGs which returned good results. Our beloved NP, Sarah, said this is common after the Fontan so we aren’t worried a bit. 

Daddy came bright and early for snuggles and goodbyes before leaving to go back home. It has been so so so so nice having him here. He’s spoiled both of us and provided endless giggles. We both miss him already!

Apollo is tuckered out after a full morning of play in the playroom with one of our cute, little friends. Yesterday was such a big day too, full of activity so Apollo is worn out. We snuggled in bed for a bit, ordered lunch, and was told it was time to pull those pacing wires. Yes, please! Even though they’re much easier to remove than those horrible chest tubes, many tears were shed which was reflective of his overall feeling today. 

When we returned, there was another wonderful surprise delivery from his aunts! Though he didn’t have much energy to show it, I know he was so happy to open up dinosaur lollipops. Who knew those existed?! He happily chose a brontosaurus to enjoy and said he was saving the rest for his brother “cause he likes the spinosaurus and others too”. Bless his sweet, thoughtful, and generous heart. 

We’re under strict orders to rest this afternoon since he has to be monitored after the pacing wires. Gladly! It’s a rainy day and I only have one of three books left to finish during nap times. This picture from yesterday includes all sorts of gifts from cherished family and friends. We have been so loved from afar and appreciate you very much!