Cardiology Update

This morning Chase had a routine checkup with his cardiologist. We'd been keeping an eye on his tricuspid valve regurgitation at prior appointments, but overall anticipated a straightforward appointment today.

We began with the typical height and weight measurements, followed by blood pressure readings on all four limbs, an EKG, and an O2 check. Everything was looking fine until we checked his oxygen saturation reading. For some reason, it never climbed any higher than 92-93. In the past, Chase has usually had sats around 97-99, so this was quite a bit lower than we anticipated.

We went back for the scheduled echo to check heart function and get pics for the cardiologist. Chase was a happy camper watching Cartoon Network during the echo (we NEVER watch this channel/programming at home so of course he was glued in LOL!).

I was surprised/concerned when the cardiologist, Dr. H, came into the echo room as this has never happened before. He requested the tech obtain specific views of Chase's LPA (left pulmonary artery), aortic arch, and of course tricuspid valve.

When the tech finished with what he thought the doctor needed, he left to go ask Dr. H to come back in to take a look to ensure he had everything he needed. Only Dr. H was with another patient, so our tech brought a second tech in (presumably more experienced) to double-check his work. She worked for a bit, then sent the first tech to find Dr. H. The cardiologist came in a second time and sat down at the echo machine (also never happened before). Dr. H looked around and was able to see most of what he wanted to see. Chase was such a trooper considering the echo took so much longer than usual!

Dr. H performing Chase's echo

Once the echo was complete, we went back to the exam room to discuss Dr. H's findings. Ultimately everything looked great -- heart function, tricuspid valve, LPA, liver, etc. However, Dr. H suspects that Chase may have a few collateral vessels that have formed, which would account for the decrease in oxygen saturation. His plan is for us to monitor Chase's O2 at home over the next 2 to 3 weeks to see if he holds around 92 or continues to slowly decrease. If it holds or continues to decrease, we will likely head to MUSC in Charleston for a heart catheterization.

This wasn't exactly the news we were hoping for, but we're grateful to find what we did so we can address it before it becomes a bigger problem. Please keep Chase in your prayers over the next few months as we make decisions about our next steps. If he's going to need a heart cath, we would definitely like to do it before Cinco makes his arrival. I'm trying not to stress out over what will unfold in the next few months. I know God has a perfect plan for this perfect boy of mine, and I fully trust Him!

For the first time in as long as I can recall, Dr. H wanted to draw some labs on Chase to check blood count, heart function, etc. So we left his office and had Chase's blood drawn at LabCorp. Y'all. He was NOT a fan. He got crazy worked up about it when I just explained to him what we needed to do. I felt awful. When it finally came time to have it done, I walked him through everything as best as I could and tried to settle him down. Bless his heart. This kid, who's been through three heart surgeries, countless heart caths, and a slew other procedures, flipped a major nut about one tiny little blood draw. Ultimately, he did great and they were able to get three vials for the tests Dr. H ordered. We finally we ready to head home, but not before a not-so-quick trip to Chick-fil-A during the lunch rush on a crazy rainy day! LOL!

Thanks for following along on Chase's heart journey and keeping our family in your prayers. Hugs to all!

"The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."    -- Philippians 5b-7

Discharged!

Yay! Chase had a mostly restful night and an early-morning chest X-ray that looked great, so we were discharged around 10:15 AM! That was by far the quickest morning discharge we've seen in MUSC history! Haha!

It wasn't all fun and games though. The nurse came in to remove his IV, which of course wasn't too pleasant. But by far the worst part was when she removed the compression tape that was wrapped all around his thigh and groin, covering the catheter insertion point. There were a LOT of tears. A lot. The poor guy! But I'm so glad he was totally free of all tape before we left so he could be more comfortable with the ride home. And so I wouldn't have to be the meanie to remove it once we get home. :)

Clearly we couldn't just leave the hospital after discharge... Chase had been looking forward to playing in the Atrium the entire time we were here, so we went straight there after leaving his room on 8D.

FISH!!!

TOYS!!!

AIR HOCKEY!!!

SUPER HEROES!!!

Hopefully we'll be on the road soon... If we can get this kid outta the playroom! I have to say, I'm astonished at how much energy he has so soon after the cath! The increased oxygen saturations are clearly working in his favor! He just never ceases to amaze me!!!!

I so love this boy!!!

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!!

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.

World's Best Mom

So I think E is gonna have that "third child" complex thing for sure. Here he is going on 4 months old and I have yet to post his birth story on the blog nor hang up a single picture of him at the house.

Horrible mom. Scarring my children for life since 2007.

On another note, I know I still haven't updated y'all on Chase's cath results or his Fontan timing. The short story is his cath went great, his pressures are great, making him a good candidate for the Fontan, and that's really all we know. We've scheduled an appointment with his local cardiologist next month as he will share any news/updates from the team at MUSC at that time, but honestly we aren't expecting much more than confirmation that we're still good for next spring. I'll update again after that appointment.

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Thank You!

Just a quick post to say Thank You to the family and friends who have prayed us through another big heart procedure on our sweet Chase. The tally is up to 2 heart surgeries, 3 heart caths, 2 bronchoscopies and 2 outpatient surgeries. This boy has been through a LOT, with at least one more heart surgery to go.

We just simply couldn't walk this journey if it weren't for the grace of God and the love and support of our family, friends, neighbors, Facebook friends, twitter followers and blog readers. I send much love and gratitude to each of you!!!

I promise I'll write a post soon with the findings from today's cath and the plan for Chase's last scheduled heart surgery, the Fontan. For now my focus is on getting Chase settled into bed (after some late-night Mario Wii per his request) and getting little E fed and settled down for the night. Oh, and hopefully a long, restful night for mommy & daddy, too!

Thanks again to all of you for supporting us though our journey.

❤️ hugs!


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Cath Complete!

Just got the call at 12:05 PM. Going to see my boy.


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Cath Update #4

Our fourth update came in at 11:37 AM. They are pulling out the catheters now and preparing to put pressure on the insertion sites. This means they are finishing up and will have him up to recovery soon. Keep praying!!


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Cath Update #3

Just got our third update at 10:51 AM. They are coiling some collateral vessels and we'll get another update in about an hour. Please keep praying for my boy!!!

FYI: "Collateral vessels are abnormal blood vessels that connect the aorta with the pulmonary arteries, but they are normally small and are not used. Children with congenital heart disease have enlarged collateral vessels, which can let blood flow from an artery to an adjacent artery or it may carry blood downstream and then back to the same artery. To stop this flow and pumping blood into the lungs, coil embolization creates a blood clot which stops this reverse flow."

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Cath Update #2

Just got our second call at 10:07 AM. They ended up using three access points, one in both legs and one in the right side of his neck. We were not expecting this. They are doing the contrast dye angiograms now.

Please keep praying.

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Cath Update #1

Just got our first call at 8:57 AM. He went under the anesthesia fine. They have femoral venous access in his right leg and are assessing arterial access from either his neck or left leg. Will get another call in about an hour.

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Cath Prep

Today has been quite an eventful day and I have never been more proud of BOTH of my boys! We had an early morning start to get us to MUSC in time for Chase's pre-cath work up, but the boys were both champs in the car. E slept basically the entire time and went almost 6 hours before he was finally ready to eat again! I was glad he did so well since this was his first long trip. Chase enjoyed lots of movies and snacks and for the most part seemed okay with our trip. He did say he didn't want to go to Charleston because he didn't want "that boy looking in his ears" (his ENT doc's student at his last visit), but overall didn't have many complaints.

We had the work up completed in record time! Only about 2 1/2 hours for the EKG, height, weight, oxygen saturation and questions. And Chase was straight up AMAZING!!! He handled everything with ease and there were no major freak outs (THANK YOU, iPad!!!). He even asked questions and wanted to know what was happening the whole time. Obviously quite different than his last cath almost 2 1/2 years ago! We answered all of his questions and discussed each activity beforehand so he'd know what to expect.

Here's our boy getting his EKG like a mad man:


And who owned the echo?? Oh, that's right -- it was Chase!


After we met with our favorite pediatric cardiology interventionist to discuss the procedure and saw our amazingly awesome anesthesiologist, we got our game plan for the cath and headed over to ENT for a quick follow up for Chase's ear tubes.

And by "quick" I mean that we waited OVER 2 1/2 HOURS just to see his ENT, who literally spent about 8 minutes in the room, 7 of which was small talk!

Whew.

Once we were finally able to leave the hospital, we went straight for -- you guessed it! -- ICE CREAM!!! I figured our big boy deserved a treat after the day he had (and the day he's going to have tomorrow).



Thanks in advance for your thoughts and prayers during Chase's cath in the morning. I'll post updates here as often as I can. We expect it'll take anywhere from 2 to 5 hours, depending on whether or not they need to do any coiling or ballooning.

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Another Heart Cath

Considering I haven't blogged in a while, it may come as a surprise to many of you to hear that Chase will be having another heart catheterization procedure at MUSC later this week. While Chase's special heart is something that is constantly on my mind, it's not something I choose to write about here often, unless of course we have heart-related news to share.

Some of you may recall that Chase had what was considered his pre-Fontan cath back in March 2011. The purpose of this cath was to confirm Chase would be a candidate for the Fontan, the third and final scheduled palliative surgery for his congenital heart defect (CHD) called Hypoplastic Left Heart Syndrome (HLHS). This cath was supposed to be his last/only cath before his third heart surgery.

However, almost 2 1/2 years have passed since his last cath procedure, and we (his parents, pediatric cardiologist and surgical team at MUSC Children's Hospital), have all agreed that it would be best to get another peek at his heart before we schedule his Fontan, which will most likely take place next spring. So that means another heart procedure involving general anesthesia and all of the not-so-lovely risks of a heart catheterization procedure.

Ugh.

Please keep our little Rock Star Chase in your thoughts and prayers throughout this week as we prepare for his procedure. The last time we went through this he wasn't quite 1 1/2, so it wasn't terribly difficult to care for him since he wasn't able to verbalize his fears, concerns, etc.

This time around, we have a very opinionated almost 4-year-old on our hands, who will be VERY aware of what is going on around him and VERY unhappy with all of it. This one is gonna be hard on all of us (none more so than Chase, of course), considering we'll also have our hands full with our little 3 month old while supporting Chase through this procedure. Should be interesting!

Here's a pic of our little Chase following his March 2011 heart cath procedure:

We're praying he rocks out this procedure and that we don't find any surprises. If you're curious about his previous cath from 2011, you can read about that here.

Thanks for your prayers!

Post-Cath Update

I'm so glad to have Chase's cath behind us. And for all intents and purposes, we shouldn't have to head back in for any procedures or surgeries for a YEAR! Yay! I don't even want to think about going in for the Fontan, so I'm totally gonna block that out of my mind for the next 12 months (or until whatever point in which I'm forced to deal with it). I'm so proud of my little man! He did so great!

I knew this one would (hopefully) be easier than the last one, our pre-Glenn cath in February 2010. For that procedure, we knew he would stay intubated afterward and recover in an ICU, which is not the standard practice, but was a safety measure we went with based on his previous history with anesthesia. It was so hard to see him after that cath. He looked like he had just come out of surgery!

Pre-Glenn Cath, February 25, 2010

This time around he looked MUCH better! See?

Pre-Fontan Cath, March 28, 2011

Adorable Toy Story hospital gown courtesy of Heartfelt Couture.

Couldn't help but take a pic of the monitor... See that 96? That's his o2! Wow, right?! He was on oxygen though, so it doesn't count. I just thought it was cool to see it so high for a change! :)

Look at that o2!

After being awake for a bit, drinking 12 sippy cups of apple juice and eating most of a banana, our little guy started to perk up!

What cath procedure?

After four hours of hourly vitals in the same day area, we were allowed to transfer to the floor, 8D. It used to be 7C, but they recently moved to a new floor and I must say the rooms are much nicer! We settled in for the night and were so happy to see some of our nurses from previous stays. Everyone commented on how BIG Chase has gotten!

Post-Oreo smirk.

Chase and I had a pretty good night. He slept for about 2 hours, was up for another 2, then slept for 3. It was nice to get some sleep on the floor! That was a rare "treat" during our previous two stays. Tuesday morning we needed to go for a chest x-ray and an echo before we could be approved for discharge.

Behaving nicely and cooperating for his echo.

Ready to get outta town!

We returned home Tuesday afternoon and it was obvious our boy was glad to be back home. A short nap, a quick shower and little dinner later, he was very much back to himself. Yay! He's been improving even more each day and honestly, you wouldn't know he'd been through a heart cath on Monday if you saw him for yourself.

Case in point. After lunch yesterday:

We were playing "Where's Chase?" while he was covered in Oreo goo. Good times!

I'm SO COMPLETELY AND TOTALLY looking forward to releasing all of us from our cold/flu/RSV season and pre-cath bubble!!! That day will be here before I know it (I hope) and we can finally get out there and enjoy doing fun stuff again! Yay!

Thanks again to our friends and family for the prayer support during this week! God clearly had His hands on our boy and brought him through this procedure successfully. Thank you, Lord!

P.S. Have you participated in my very first ever blog giveaway ever? If not, click here to leave your comment and win a messenger tote, handcrafted by yours truly! :)

Day 2 Update

Chase had a good night. We both were able to sleep for about two hours, then up to play for about two more, then another three hour nap. He was wonderful and is definitely starting to get his sweet, lovable personality back.

We went down for a chest xray earlier this morning and are waiting to be called down for an echo. Once those are done, the docs can review everything and (hopefully) approve our discharge. We're hopeful that'll happen by 10 or 11 AM but one never knows how that translates in "hospital time." I'm looking forward to getting out of here, getting our stuff packed up at the hotel and getting on the road home this afternoon. I can't wait to sleep in my own bed! These past two nights have been exhausting!!

I'm happy to report that LO has had a wonderful "vacation" here with her Gramma & PaPa. She's in heaven having their undivided attention for two days straight! They took her to the aquarium yesterday and when I talked to her last night, she was non-stop with all she wanted to tell me about her day and all the fun she had. It makes being here in the hospital and putting Chase through this procedure a little easier knowing she's taken care of and is having so much fun! Yay!!

Thanks again to everyone for your prayer support. We are very grateful to have friends and family care about our little family. Thank you!




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Cath Update

Cath was successful! He had no negative reactions to the anesthesia. The LPA narrowing measured 3.5 and was ballooned to 5. There was no restriction in the blood flow where the narrowing was, so that was a blessing. His valve showed a mild regurgitation, which was previously only trace (not an improvement). His pressures and heart function looked great. There was one large collateral that he had to coil. He didn't see any reason to rush his Fontan -- meaning we will probably have about a year 'til his next surgery, and he shouldn't require another cath beforehand.

Overall we got great news. Now we need to keep him flat and still for another 30 minutes (he's still sedated for now so that helps). Should head to an overnight room on the floor in a few hours once he's awake and alert.

Thank you for your prayers today!


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