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An Upcoming Cath

Hey friends!  This will be a brief post, but I just wanted to let all my readers know that on Tuesday, March 21st, Nolan will be going in to Levine Children’s Hospital for a scheduled cardiac catheterization.  They’ll be taking a good look at his heart function, pressures, and how well his Fontan circuit is doing.  Moreover they plan to do some things to help bring up his oxygen saturations, which have been just a little on the low side post-Fontan.  We’re expecting to be there overnight, which is not unusual for Nolan.  We appreciate any prayers, kind thoughts, good vibes, etc.  I’ll post some updates here later on but if you want quicker updates, you can definitely visit Nolan’s facebook page.

THANK YOU!!!

NolanBowtie

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Cardiac Cath: “It’s Ok Dad”

The time finally came for Nolan’s cardiac catheterization.  We knew it was the next necessary step before Nolan’s surgery, but we were both pretty nervous about it.  We got someone to watch the other boys while we left the house bright and early to be at Levine Children’s Hospital.  I mentioned before that I love LCH: it’s bright and cheerful and has a very cool and colorful lobby.  This time, though, as we were checking in for Nolan’s procedure, I was just flooded with memories about Nolan’s first surgery and very lengthy recovery.  I quietly asked God over and over to make this quick and painless with a fast recovery…I didn’t think I had the strength to practically live at the hospital again. 

We were escorted up to a room where a nurse had us put Nolan in a gown, which was comedically too big for him, and she took his vitals.  The anesthesia team came to chat with us for a little bit before we were finally told that it was time to go to the cath lab.  Unlike Nolan’s first surgery where he was wheeled there, I got a chance to carry him.  That was good.  I needed that, big time.  As we walked through several hallways and waited for the elevator, I held Nolan closely and tried to whisper confident things to him…all the while my legs felt like jello.  But here’s the funny thing: Nolan had started doing this thing where he really liked playing with my facial hair.  Whenever I would snuggle with him, he would reach up and rub his hands on my face and coo softly.  I loved it.

OkDad

There, as we waited for the elevator, Nolan did just that.  He reached up and rubbed my face…it felt like he was saying, “It’s ok Dad…I’m going to be fine.”  And then I felt fine.  He’s ok, I’m ok. 

We went down to the cath lab waiting area and continued to play with Nolan and make him smile.  Meanwhile a nurse brought little stuffed animals for Nolan and his 2 brothers.  It was very sweet…LCH is the BEST.  Eventually it was time for them to take Nolan back…and we were escorted up to that big waiting room that I hated so much. 

We got word that the anesthesia took a long time…apparently Nolan is a very difficult stick, and the procedures would finally begin.  While we were waiting, someone with the GI Team brought us this creepy doll (I named it Ming Fu) that demonstrated Nolan’s new G-Tube button, along with some literature about the button and how to remove and replace it.  Wait,what?  Yes…this tube would be pulled completely from his body if it was pulled hard enough…and if that happened, we would need to know how to put it back in.  What the what?  That’s NASTY.  I was NOT thrilled about that idea, nor was I enamored with the fact that we’d be replacing the button every few months.  Ugh what was next?

We got word that the GI procedure was complete and went well.  The doctor came up and explained everything to us and even answered a few questions about Nolan’s diet and spitting up problems (the kid was a faucet).  Then we waited for the cath to be complete.  When that was done, we let out a hugh sigh of relief and were escorted to see Nolan.  He was in a post-op room: he had been extubated successfully and he was quite a bit cranky.  The nurse told us that they had a hard time finding a good place for his anesthesia iv, so they had to go in through his neck.  Poor baby.  He was a little achy from all the procedures, so he got some pain meds and eventually he fell asleep.  We stayed to comfort him, even as he got moved up to Progressive Care.  Within a couple hours, he was doing just fine:

NolanPostCath

False Start x2

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WHOOOPS!  I love this picture because I feel like it sums up what this post is going to be about…

We were nervous about Nolan’s 2nd surgery, but before we even got there, he had to get through a cardiac catheterization first.  We had a date set and were ready to get there…but then Nolan got an ear infection.  No go.  False start #1!  So we had to put him on antibiotic and wait for the ear infection to clear up before we did the cath.  So we re-scheduled.  And we waited. 

Once Nolan’s ears were lookin’ good and we were getting closer to our cath date…Nolan caught a cold.  Seriously?  Ugh.  We were told they wouldn’t do a cath with a cold because they run the risk of the breathing tube pushing secretions further down and having Nolan develop pneumonia.  Don’t nobody got time for that.  False start #2!  Good Lord, can we get some luck here?  It was like one minute we were hesitant about this, but now we just wanted to get it over with!

Finally, Nolan’s cold cleared up…we had a cath appointment, and it looked like we were going to keep this one.  Now that we jumped all those hurdles, it was on to the next one: heading back to Levine Children’s Hospital…

Cardiac Cath Consult

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While we were chugging along with Nolan and the rest of our gang, we were told by our cardiologist that Nolan’s second open heart surgery was coming soon, but that he would have to undergo a cardiac catheterization first.  The 2nd surgery was already this monster looming ahead of us, so another “procedure” is definitely not something we were looking forward to.  We had an appointment with another cardiologist who worked in the cath lab.  He was actually a really nice guy…and come to find out he was from Connecticut just like me!  Of course, I had to ask him about a pizza place I love called Pepe’s Pizza in New Haven.  This is my fav restaurant EVER.  He said he was sorta related to the family that owned the place.  I was floored…I instantly liked this guy.  But anyway, on to the serious stuff: the cath was important because it allowed them to look at the heart’s functioning up close to see if he’s readyf or the second surgery.  They would look at his arteries, the Sano Shunt that was put in during his first surgery, and his heart pressures. 

Nolan would be brought in to the hospital for the cath and would be placed under anesthesia before the GI team would come in.  Why GI?  Well to this point, if you recall, Nolan has had a feeding tube since he hasn’t been eating by mouth.  The G-Tube he had isn’t a long-term tube and would eventually need to be replaced by one called the Mickey Button (more on that in another post).  The GI Doctor would remove the old G-Tube and put in the Mickey button before the cath team comes in to do the cath procedure.  This involves entering an artery through the leg and moving a little camera up to the heart to have a look around.  It wasn’t a lengthy procedure, but it was a necessary one…no way around the cath.

The doctor told us that occasionally they’ll see some things like narrow arteries or something like that, and it’s something they can repair right there in the cath: just open it up with a balloon.  They can close things off too if need be.  Of course, if that would be done, it would delay his 2nd surgery until that was fully healed.  The goal of the cath is to ensure everything is a-ok before proceeding with another open heart surgery.  The doctor also said that Nolan would probably be kept overnight at the hospital since most heart babies are slower to get their sats back to normal after the procedure so they give them some time and observation.  The doctor did also say that eeeeevery now and then the sats don’t come up the way they want and they will go ahead and do the surgery within a couple days.  That freaked me out.  It’s enough trying to build yourself up for a surgery, but knowing the possibility it could be in a couple days?  Yeah, scary.  But the more I thought about it, the more confident I felt that Nolan was going to be ok.  We just had to keep praying hard. 

They set an appointment for Nolan’s cath and all we had to do was wait…