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.

Four Weeks

Four weeks ago today. Still so hard to believe what a miracle this child truly is. We are so blessed.

Post-Fontan Home Update

We've been home for 3 days now and it sure is wonderful... well, mostly! We arrived Sunday evening and managed to unload both cars, unpack most of the suitcases, eat dinner, and get the kids bathed. That was a pretty big success for us!

Monday involved 12 loads of laundry and a bit more unpacking. But mostly it was just this weird feeling of not knowing what to do with myself! We had an expectation that we'd be in Charleston for a month, so to be back home after less than 2 weeks? It's been an adjustment, at least mentally for sure. Hubs hasn't returned to work, LO hasn't (and won't be) returning to school and it's just been a bit weird all being at home together. My guess is hubs will return to work after the holiday weekend on Tuesday, and hopefully I can start to work more diligently on LO's homeschooling (at least adding Bible to her existing math and reading work). I'm also hopeful to have a "Water Play Day" in the backyard as a way to celebrate the end of the school year and to celebrate Chase's rocking of the Fontan.

Tuesday was just like Monday, except we knocked out an early morning park run for the kids to play, followed by the dreaded Walmart and grocery store runs. At least now we're stocked up on the essentials and can actually eat meals at home again! Score! Oh, and I should mention that Tuesday morning started with Chase coming into our room and showing us his chest... he had peeled off all but 2 of the steri-strips that were covering his chest incision. I about fell out of bed! Those were supposed to stay on and fall off on their own, usually at around 14 days post-op. Apparently they had been itching him so he peeled them off. I'm really hopeful he didn't do any permanent damage! Haha!

This morning we had a post-surgery follow up with the cardiologist. I expected a chest x-ray to check for fluid and possibly an echo, but they didn't do either. He sounded fine and they didn't see any reason for the additional tests today. But really I think it was because Chase's usual cardiologist was traveling so we had to see a different one, and they didn't want do make any changes -- they'd rather let his cardiologist do it. Hopefully we can decrease his Lasix from 3x/day to 2x/day when we go back next Tuesday to see his regular cardiologist as he really doesn't like that med. In fact, he's been continuing to fight us on every liquid oral med. It's terrible giving him pain meds (Tylenol or Oxycodone) because be fights like a madman! The doctor did remove he stitch that closed Chase's mediastinal chest tube site today, so at least that was done!

So for now it's just a matter of figuring out our new post-Fontan normal and doing what we can to help Chase settle down with his new physiology. He's been showing what I'd almost classify as signs of PTSD, for good reason! Literally everything is a huge battle with him, from eating to bathing to walking 10 steps to the bathroom. Like, everything. Seriously. It's insane. Please pray for lots of patience and understanding for this tired, worn out mama -- and for daddy who has to take on the extra workload when mama runs away for a mental health break!!!

I also want to mention again how very grateful we are to the many, many, many of you who sent cards, letters, gifts and other well-wishes to Chase, LO and E during the past few weeks. We've had a tremendous amount of support and are so very grateful to each of you! Thank you so much!!!

Now for a few pics!

FINALLY leaving the hospital...

In the car and headed home with Ginormous Mario.

Dinner at home for the first time post-Fontan!

E gets so excited playing with balloons!

Some fun at the park on Tuesday!

Sweet boy getting some sun with mommy this afternoon.

Sleepy boy wasn't too excited about a Walmart run on Tuesday...

More fun at the park!

This boy amazes me every day. He's our living, breathing miracle!

DISCHARGED!!!

More details to come soon, but I just wanted to let everyone know we were discharged this morning and we are currently on our way HOME!!!

Thank you to everyone who lifted us up in prayer and supported us through this journey. We appreciate all of the calls, texts, Facebook messages, cards, video messages and gifts from each of you! ❤️



- Posted from my beloved iPhone

Post-Fontan Day 8

Well, apparently they don't count the surgery day around here as an actual post-Fontan day, so looks like today (Friday) was technically Day 7. I won't be updating the past week of blog entries to reflect that, but suffice it to say we are heading into Day 8 tomorrow (Saturday) and as it looks right now, we will be DISCHARGED!!!

So they removed his left and right pleural chest tubes this afternoon as well as his central line. The order is already in for Dr. K to remove his medialstinal chest tube and pacing wires tomorrow morning, followed by an x-ray and echo before DISCHARGE!!!

Can you tell I'm a bit excited!?? I still can hardly believe how amazing he's done. Literally, he had just come out of heart surgery and was still intubated in the ICU at this time last week. And here we are talking about getting him out of here TOMORROW.

God has been so faithful and has heard our many prayers! We have been so blessed to have such a supportive family, amazing friends and a loving church family to help us on our journey with Chase. I cannot say enough to thank each of you who called, sent a card or gift and encouraged me with text messages throughout the last 2 weeks. Truly you were all used by God to help me through this difficult time and I will always be grateful!

Miracles happen here. Trust me.


A trip to the Atrium this morning!






Somebody was really quite happy with his Versed/Oxyxodone cocktail before his tubes were removed.





A post-removal chest x-ray. So cool!


My tired baby boy!

Post-Fontan Night 7 - Updated!!!

Quick Update (5/16/2014 10:05 AM): The doctors just finished rounds and we received some EXCELLENT news!!! As of right now, the plan is to remove his left and right pleural chest tubes and pacing wires this afternoon after Dr. K is out of surgery (Chase's surgeon, Dr. B, isn't here today). Hurray!!! It sounds like his central IV will also come out of his neck (a huge relief to Chase as the tegaderm is constantly pulling his skin and is very uncomfortable). This means the ONLY thing left will be his medialstinal chest tube, which is on track for coming out tomorrow!!!!!

Way to rock the Fontan, Chase!!!

Chase had a great evening and night last night. His o2 was turned OFF and has stayed off! Yay!! This makes him super happy because he was constantly irritated by that nasal cannula. His left and right pleural chest tubes have drained almost nothing and I feel pretty confident they will both come out today. Praise! His mediastinal chest tube drainage has slowed significantly but I would imagine it will stay until tomorrow.

We had a visit yesterday from a nurse who was preparing the prescriptions that we would go HOME on, which was a very encouraging thing! He'll continue to take a baby aspirin (for life), will have Lasix (a diuretic) to help continue to dry him up (he'll wean completely off of it over the course of 2-3 weeks following discharge) and a 5-day supply of Oxyxodone for pain (helpful with the long car ride home). He was on the blood pressure medicine Enalapril before surgery but they haven't started that one back up yet. It's possible they won't put him back on it since his BP has been so great, which means he'd literally be down to taking one aspirin a day -- THAT'S IT! Awesome!!!

Yesterday he was able to get out of bed and take the wagon down to the Atrium (play area) TWICE and even got up and walked around while we were there, which was HUGE! He had a great time playing with big sis, Gramma & PaPa.












After the play room fun, he fell asleep early, around 7pm, and basically slept through the night.


This is great because he certainly needs the rest -- especially after his big day of moving around and walking. But he didn't eat dinner, won't eat breakfast this morning and hasn't peed in over 12 hours, even with Lasix. We definitely need to get him eating and drinking more today.

I'll update this post after this morning's rounds to see if we'll be losing any chest tubes today. Please pray this is the case!

Post-Fontan Day 6/7

Quick Update (5/15/14 10:20 AM): They just finished rounds and looks like we're keeping all 3 chest tubes for another day. There's a chance he may lose the 2 pleural tubes tomorrow but the center one will be sticking around for a while. Exactly what we've been afraid of. They did say he can lose the oxygen and see how he does.

I didn't get around to posting a Day 6 recap yesterday following our morning rounds update, but it was a pretty great day overall!

This was Chase on Tuesday. Obviously very thrilled with his current situation.

And here he is on Wednesday morning, slowly starting to perk up after getting into the treasure box of toys and goodies mommy brought for him!

As I mentioned yesterday, the pain management regimen of Tylenol and Oxycodone was very successful in getting our boy back to feeling and acting like himself! We played in his room a good bit and even made it downstairs to the Atrium! It was definitely a ginormous effort to get him out of his bed along with his three chest tubes and two pleur-evacs and an oxygen tank. Luckily we were able to disconnect his Milrinone IV drip so we didn't have to bring the IV pole with us. But we managed to get him loaded up into a wagon and make our way to the elevator to go down one floor to the Atrium. He was quite thrilled, as you can clearly see here.

But he absolutely LOVED it! It was so great to see his eyes light up and even finally see a smile on that sweet face of his.

We were there for all of about 5 minutes before he announced he needed to go potty. This of course meant we needed to scurry ourselves back upstairs to his room, which we did! He went potty and was more than happy to go back downstairs again. Whew! That was so great! We went back downstairs and he played for a good 15 minutes or so. He didn't get out of his wagon, but just having him sitting up and out of his bed was a MAJOR accomplishment! Getting him moving helped get some of the fluid off his lungs, too, so we were very glad to see that!

The evening was pretty quiet and uneventful. He just relaxed in his bed and caught up on some movies and iPad games.

The night sounds like it went pretty well. I actually went to the rental house and slept there last night... my first night in a real bed since the night before surgery! It was heavenly! I was able to feed E before he went to bed, take a shower, cuddle and chat with LO and get a great night of sleep before returning to the hospital for day 7!

Currently we're waiting on rounds to find out what the game plan is for today. There's a tiny chance his left and right pleural chest tubes may come out today as the drainage from these tubes has been insignificant. The center tube is still draining a bit so I don't foresee that one coming out until tomorrow at the very earliest.

Our plan for today is to get Chase back downstairs to the Atrium this morning after rounds for a bit. Then I'm going to give him a "bath" and get him changed before a visit from LO this afternoon and another trip to the Atrium! Gramma and PaPa are planning to stop by as well, so it should be a fun day for Chase! Yay!

I'll update more after we hear from the doctors this morning following rounds. Maybe say a few prayers that we lose a couple of chest tubes today!!! :)