Monday, November 30, 2015

All Settled In!

It's been a quiet afternoon here at MUSC. I was able to hold Chase in the Same Day area while we waited for his step-down room on 8D to be ready, and he fell asleep in my arms. Talk about a flashback to our many previous stays here! It was too sweet!


After his brief nap, it was time to head up to his room for the night! Usually this guy gets a bed transport, but I guess now that he's SIX, he's big enough for a wheelchair ride upstairs. My, how he's grown!! Notice how thrilled he was... ;)


Once settled on 8D, he got to work playing more of his Nintendo 2DS, and eventually even ate some dinner! He's definitely getting to be more like himself the longer we're here.


After dinner it was time to chat with the kiddos at home! A fun FaceTime later, and it was back to more video games. :)


He's all settled in for the night. Hubs and I have the joy of staying here with him, which means we get to fight over the uncomfortable couch or the uncomfortable chair for the night! Not sure who will actually be the winner in this fight! Haha!


Thanks again for your prayers for Chase! We're hopeful for a restful night (at least for Chase!), a clear chest X-ray in the morning, and a quick discharge to get us on our way home! 

Post Cath!

We're with our brave boy and he looks great! He was a little agitated when we first arrived as he was initially coming out of the anesthesia, but after some Tylenol, he's resting more comfortably. He was feeling nauseous, too, so we put some Zofran in him as well. Looks like he's doing fine now. :))

We just spoke with the cardiologist for a summary of the procedure. Everything went great! The fenestration was closed and his pressures responded very favorably. His LPA was ballooned and the gradient was successfully decreased to Dr. Baker's satisfaction. There was one collateral vessel, but he decided not to coil it off so he would still have a "pop-off" for pressure if needed. All in all, it was a great, textbook case!

Here are a few pics!

Laying flat... the worst part!



And check this out! Pre-cath, he was satting at 88, which was actually a good 3 to 5 points higher than we've seen lately at home. Now? He's at 96!!! Amazing for a boy that's spent his entire life in the 80s!!!


Sitting up now. We're on the right track!


We know all is well when we see this:


Thank you for the continued prayers! We hope to be discharged by noon or so tomorrow, assuming his chest X-ray looks clear.

Cath Update #3

11:09 AM:

We just got our third update from the Cath Lab. They are finished! The did balloon the left pulmonary artery (LPA), which wasn't a big surprise since he's had narrowing there in the past. They are pulling the catheters, placing pressure, and will be heading back over to Same Day for us to meet them there. We will get another phone call to confirm they are ready for us to come up and see him.

Thank you for your continued prayers!


Cath Update #2

10:30 AM:

We just got our second update from the Cath Lab. Chase is doing well! They have determined that the test occlusion was successful and they WILL be closing his fenestration today (the hole in his heart left after his previous heart surgery). This is great news simply because it means we won't have to repeat the procedure again in a year or two to try again. It also should result in increased oxygen saturations, which was our big goal for today.

Here's a pic that demonstrates the open vs. closed fenestration in Chase's heart:


Click here for more information on this procedure.

However, the nurse mentioned that Dr. Baker will be completing an additional intervention that we weren't necessarily expecting: he will be ballooning a narrowing somewhere, but we were not given any details on where (pulmonary artery, aorta, etc.). Chase previously had narrowing in his LPA (left pulmonary artery), which was unsuccessfully ballooned and then patched during his 2nd heart surgery. It is somewhat troubling to hear that he has a narrowing significant enough to require ballooning, but it's also helpful for the team to complete any intervention they can while they are in the Cath Lab to give Chase as much help as he can get to keep his incredible half-a-heart functioning at it's best.

Based on these interventions, Chase will definitely be admitted to the hospital overnight for observation.

There has been no word yet on any collateral vessels that need to be coiled off -- one of the additional interventions we were told may possibly need to take place.

We hope to have more information with our next update in about an hour.

Please continue to pray for our Rock Star! Coming out of anesthesia has been tricky for him in the past, and we are praying for the adequate doses of the right meds to help bring him out the best way possible.


Cath Update #1

9:04 AM:

We just got our first phone call from the Cath Lab. Chase went to sleep great (whew!) and they were able to get IV access in his right hand.

For the cath procedure, they obtained femoral access from his right groin, and just finished the echo.

They are moving onto taking measurements now. We should get our next call in about an hour.

Thank you for your continued prayers for our Rock Star!


Heart Cath #4... Here We Go!

We arrived in Charleston for Chase's 4th heart catheterization last night and had a relatively restful night, all things considered. Daddy thought 20 oz. of Gatorade at 9 PM would be a good way to get him hydrated the night before the procedure. He was literally running circles in the kitchen like a madman at 10 PM. It was insane! And hilarious!!

video

We arrived at MUSC Children's Hospital this morning just after 6 AM. He walked in like he owned the place! Haha!


Chase has been in good spirits all morning, but he has had a moment or two where he told me he was scared. I reminded him how many people love him and are praying for him. He's been such a trooper!

We got through registration and went through the work up in the Same Day area. He was a little agitated but did a great job overall.



He didn't love the idea of taking his "happy medicine" (Versed), but not long after we were able to get that in him, he turned into a hilariously happy camper!



Around 7:45 AM, they came by to wheel him down to the Cath Lab. It's always bittersweet watching him leave our care and head into a procedure or surgery, but we know he's in good hands.





Thank you for your prayers today during Chase's procedure! We will keep you updated as we get our hourly phone calls from the nurse.

Sunday, November 15, 2015

Chase's New Super Mario Bros. Room!

Saturday was a busy day around here! Several Pinterest projects over the past few months have led up to a big day... transforming Chase's train room to a ((drumroll...))

Super Mario Bros. Room!

{{insert feigns of shock and awe here}}

It seems like just yesterday we were finally getting around to updating Chase's room from sparse nothingness to a super cute train room back in December 2012. And here we are, almost 3 years later, finally transforming his chambers into a tribute to his beloved Mario!

Clearly I will be sharing a ton of photos of the transformation below, as well as Chase's first look at the big unveiling. For a sneak peak of the inspiration behind his new room, take a look at my Pinterest board!


So fun, right?? I started working through the various projects about 2 months ago. With 3 kids, homeschooling, and a myriad of outside commitments, I knew I wouldn't have a ton of uninterrupted time to focus on any one thing. So I made sure to give myself plenty of time to accomplish everything I wanted to include in his new room.

I'll share the details on the individual projects and purchases at the end of this post. But first, I want to share how excited Chase was to discover this huge surprise awaiting him once he returned from a full day of fun at Mona's with his big sister and little bro.

Here's his first look at his new Super Mario room! He was SO surprised... and I think he liked it! :)


He walked all around his room, taking it all in. There was a LOT of Mario happening in this small space, and it was awesome to watch his response to each and every new thing he noticed.


What?? That trash can looks like a pipe! And Luigi is about to go down into the pipe! Haha!


Here he is explaining an incredibly interesting Mario fact to me.


He loved the new light switch cover! He's a big fan of all things superstar!


He had to identify all of the characters on his new bedding.


And he was so pleased that he could reach his radio/CD player now that it isn't out of reach on top of his dresser as it was previously. He explained to me exactly how to turn it on and find his favorite Christian radio station.


Wow! His books were so nicely organized and categorized. Obviously mommy was here! LOL!


He thought the new Question Block bins were sooooo cool! Plenty of storage space for his favorite toys!


It didn't take long for him to dive into his new Super Mario Bros. bed! It was just amazing to see him so happy! His response was so worth the time and effort put into this transformation. He is so incredible! I just love him SO MUCH!!!



I have to share this next photo because it was stinkin' hilarious when I first saw it as I looked through all of the pictures I had taken of the big reveal. This was LO's reaction when she first saw Chase's new room. You could say she was pretty surprised, too! Bwahahahahaha!


And here she was just seconds later. She really loved it and was so happy for Chase!


Awesomesauce, right?! So are you ready to take a look at the exciting details? So many fun projects and purchases to bring it all together. Let's take a look! Oh, and links to the sources of my inspiration are in {brackets}, while links to the products I purchased are not.

To begin, we needed a Super Mario themed bed (duh) as the focal point of the room. I picked up this Super Mario Sheet Set and made the red "M" throw pillow, then added Chase's Super Mario stuffed friends to complete the look. We painted the accent wall behind his bed a shade of blue similar to the sky from Super Mario Bros. called Grandma's Sweater by Benjamin Moore. Then I added these vinyl decals from eBay to create a fun mural above his bed.


Next up, I picked up a KALLAX shelving unit from IKEA along with four DRĂ–NA storage bins in yellow to create these adorable {Question Block Bins}. NOTE: I used no-sew iron-on adhesive to attach the fabric question marks and circles to the bins rather than the process used in the inspiration post.


Seriously. This is the cutest. thing. ever. amiright?? This little {Bob-omb Lamp} is one of my most favorite little projects in the room! I purchased this adorable mini ceramic globe lamp, painted the eyes and cut out the feet from a piece of yellow card stock. It was one of the easiest and quickest projects! Love it.


If the Bob-omb Lamp is my most fave, these {Piranha Plant Lamps} are a very close second! Two TERTIAL work lamps from IKEA, a bit of hand-painting, spray-painting, and wire-splicing, and BOOM. Adorable! These lamps are perfect for reading!


This next project was another favorite (there are so many!). I found a {Super Star Canvas Print} on zulily as my inspiration and customized my own design with the help of a talented designer friend. Because of course, my sweet little guy is the most invincible person I know!


No 6-year-old's room would be complete without a nightlight, so I picked up a set of Star Shaped Night Lights and painted them yellow. They are LED lights and not very bright, so I was glad that they came as a set of two.


When we updated LO's room back in 2013, I covered her light switch plate with fabric and modge podged it like a madwoman. I decided to rock out the same technique for Chase's new room. If you need a tutorial for this project, I found this {Upholstered Light Switch Plate} that follows my steps pretty closely. Such a fun, easy, and cheap way to add some fun to a room!


Haha! This next one was hilarious! We all worked together as a family to put a 550-piece Super Mario Bros. 2 puzzle together about a month or two ago. It had been on our dining room table for quite some time before I swiped it away into my secret work area to frame it for Chase's room! I watched this YouTube video on {How to Use Jigsaw Puzzle Glue} since I hadn't done it before, and it was super easy! The best part was that it took forever for them to notice the puzzle was gone, and once they did, they were crazy disappointed thinking I had taken it apart and put it back in the box. All that hard work, right!? So they were both so excited to see it up on the wall!


I saw this super cute {Cloud Garland} on Etsy and decided to make my own to hang up on the accent wall we had painted. I so love how cute it turned out! I can see this sort of thing as a super fun party decoration (because, let's face it, we'll probably see another Super Mario birthday party or two in our little guy's future).  :)


Oh! Oh! Oh! This next little project was super simple AND super cheap... my favorite! I purchased two of these Question Blocks candy tins from Amazon, had hubs drill holes in the sides of them, and put them onto the ends of Chase's existing curtain rod to create this fun {Question Block Curtain Rod}. Bonus? The kids loved the coin-shaped candies from inside the tins!



I picked up another set of vinyl Super Mario Wall Decals to put on one of the walls where Chase could easily reach them and rearrange them to create his very own Super Mario adventure.


How adorable is this {Pipe Trash Can}?? Another super simple and inexpensive addition to the room.


And finally, what little brother's new Super Mario room would be complete without a one-of-a-kind original artwork from big sis? Love.


Whew! I think we have a very happy 6-year-old Super Mario super fan. Awwwwww... LOVE HIM.


Hope you enjoyed this crazy lengthy recap of our big bedroom transformation project! And in case you observant folks are wondering where all of the adorable train decor ended up after we removed it to make room for Mario, you'll be happy to know it all found it's way down the hall to a brand new owner! More on that big reveal up next!

Monday, November 2, 2015

First Surgery... Six Years Later

Six years ago today, at 6:33 AM, I watched helplessly as my 7-day-old son was wheeled down a long hallway inside the Medical University of South Carolina, towards the Operating Room, to undergo his first life-saving open-heart surgery, the Norwood Operation. This was the last picture I took of him before he was wheeled away to the OR:


It would be a grueling, arduous 8 hours and 23 minutes before we received word that the surgery was complete. I can recall those moments in the PCICU waiting room in vivid detail, as if it were just yesterday that I helplessly awaited each and every update from the OR, informing me of whether or not my newborn baby was handling this open-heart operation as we had hoped and prayed. I remember who was there with us as we waited. I remember the sights and sounds of the waiting room. I remember the smell of the antibacterial hand soap in the bathrooms. I remember walking into the PCICU throughout the day to grab the key to the pumping room to develop a supply of milk to nourish my baby via ng-tube, since it was uncertain when or if he would be able to take a bottle. I remember walking across the street for lunch. I remember the relationships with other families in similar situations with their children that we established. It all seems so surreal -- like it was yesterday, but also a lifetime ago.

This is what I shared on my blog on November 2, 2009 after I saw Chase for the very first time following surgery:
Hubs and I got to see Chase for about 5 minutes once he was stable in the PCICU following his surgery. They had a blanket over him so I didn't see his open chest or any of the chest tubes, lines, etc. that were added during the surgery. He looked very peaceful and not as swollen as I was expecting, although we were told he would get more swollen over the next day or two. Luckily we were very pleased to hear he was already peeing out some of the excess fluid, which was a big blessing to know his renal system was functioning well so soon after surgery. We were also told they had been able to reduce some of the medications he was on as well! This is all very encouraging!!! 
I will admit I'm fearful of the next 24 to 48 hours as Chase's body responds to the major changes to his heart and circulatory system. I'm scared we're going to get a call at 2AM telling us something is terribly bad with him. But I know that's just my human side trying to prepare for the worst-case scenario, when truly I should be focusing on the miracle of what God did in Chase's life today and the peace He's given me for our future and our little boy! This is hard but I know it's doable with God in control of our lives. 
This is the first photo I took of Chase after he returned from the OR. There were so many lines, wires, medications... it was unbelievable to see my newborn baby like this. The nurse had placed a blanket over his chest so I wouldn't be able to see his beating heart, as his chest was left open following the surgery to account for swelling (it would be 3 days before the surgeon would close his chest).


Today, as I think of the past 6 years and the path God has brought us through, I cannot help but thank Him and praise Him for his love, mercy, and healing touch on my sweet son! Just last week, we had the honor and privilege of celebrating six years with this incredible boy! He is such an amazing, compassionate, and loving little guy and the biggest blessing in my life! ♥