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!!

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.