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What Do You Mean “He’s Not Available”?!

SayWhat

It was coming up to that time: Nolan was fully recovered from his Norwood Procedure, he had a successful cardiac catheterization…now it was time to schedule his next heart surgery, the Glenn Procedure.  We could definitely see Nolan getting a little stronger and gaining weight slowly but surely.  While we looked hopefully towards the future, I’d be lying if I said I didn’t have some anxiety about yet another surgery for Nolan.  The recovery for the first one took so much time and I didn’t think I could handle another lengthy recovery.

The cardiac team called us one day to talk about scheduling Nolan’s Glenn Procedure.  They gave us the date of July 17th but noted that Dr. Peeler, the renowned HLHS surgeon who did Nolan’s first surgery was not available.  I was like WHAT?!  I mean Dr. Peeler is THE Man for HLHS babies and you’re gonna try to schedule a surgery without him?  You gotta be freakin’ kidding me!  No offense to Dr. Maxey, the other surgeon, but really?

So I called them back.  I was like, “I don’t mean to offend anyone, but we NEED Dr. Peeler.”  The scheduler replied, “Well Dr. Peeler will be on vacation and won’t be back for several weeks, and even then his schedule is booked up.”  I sighed loudly.  I felt defeated…and suddenly scared to death.  I mean the Glenn Procedure is supposed to occur between 6 and 8 months of age.  By July 2013 Nolan would be 7 months old…if we waited longer, it could be bad for him.  So very reluctantly I agreed to keep the July 17th date. 

We also had a meeting with Dr. Maxey scheduled…first off, let me say that I love Dr. Maxey, I think he’s an awesome guy and I’m thankful he’s on our team, but I was worried I’d offend him since I came prepared with questions. He started off by taking a look at Nolan and expressing how happy he was to see his progress.  Then he talked about the Glenn Procedure and what they would be doing and why (See yesterday’s post for more info).  Interestingly, he mentioned that the procedure will take about 3-5 hours, but only 45 minutes of that will be spent working on the heart itself.  Amazing.  He said a lot of time is given to prepare and to get through any scar tissue.  He said “If you don’t hear from us, it’s ok.”  Then he asked if we had any questions.  So off I went: how many of these have you done?  Was the last one?  How many have you done by yourself?  Then I apologized and he smiled and said it was ok: he understood we had the utmost care for Nolan and wasn’t offended.  He told us he does TONS of Glenn procedures and has been doing them for a long time.  I felt pretty satisfied by that…I mean, what other option was there, right?

And to be honest, even if it was Dr. Peeler sitting there in front of me, I would’ve had some nervousness too.  There will never, ever be a time where sending your child for any surgery or procedure will be easy.

One thing to note, for all HLHS families out there who haven’t gone through the Glenn yet: Dr. Maxey did mention that the only bad thing post-Glenn is what he called “Glenn Head”.  He said in essence all the blood from the upper body is now being re-routed and it brings a wicked headache that can last for a couple days to more than that.  But he said it eventually goes away…oh boy…

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Let’s Discuss Surgery

After a couple days of both boys being in the NICU, we were told that we were going to speak with the surgeon.  Well we already did that, right?  Well yeah, we did meet Dr. Peeler, but this time we’d meet the other surgeon, Dr. Maxey.  My first thought was “Ok, what can he tell us that we don’t already know?”  but we agreed.  Dr. Maxey chose to meet us in the NICU so we could be close to our kids…definitely a nice first impression.  He was very kind and personable and pulled up a chair and said, “I’ve cleared up my schedule to be sure I give you all the time you need to have your questions answered.”  WOW!  That’s pretty special, right?

So Dr. Maxey gave a quick rundown of what HLHS was, which we were pretty good with, and then began to describe the initial surgery, which was called the Norwood Procedure.  He was very, VERY clear that the Norwood Procedure is a very serious open-heart surgery.  It is intricate and challenging and a baby’s heart is roughly the size of a quarter.  A QUARTER.  How the heck do they do surgery on that?!  Then he said something that absolutely wrecked me: nationally about 20% of kids (1 in 5) do not make it through the Norwood Procedure.  Oh my God.  BUT, he said, he and Dr. Peeler have a ton of experience on the Norwood and do each Norwood Procedure together.  He said their rate of success is 97%.  Whew, that’s much better.  But…what if Nolan ends up as that tiny 3%?  How would I cope?  What would I do?  Is that even fair?

Dr. Maxey was such a nice guy.  He did a great job of reassuring us we were in the best place for Nolan, but still reminded us that this surgery was very serious and could take upwards of 6 hours or more.  He said sometimes they won’t be able to close the chest post-surgery due to swelling and that’s ok.  He said he had time and asked us if we had any questions.  I’m not sure if I even asked him any…honestly I was nervous for my son and just as much nervous for myself because I realized I’d never been so anxious in my life.   Surgery was set for the morning of December 17th…7 days after Nolan was born.

I enjoyed meeting Dr. Maxey: he does a great job of being informative and reassuring.  He and Dr. Peeler make a great team.

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