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Thankfulness pt. 1: Levine Children’s Hospital

We’re coming up on Thanksgiving and I like to use this time to reflect on the things I’m thankful for.  I’m trying really hard not to re-write the last Thanksgiving post I did.  So what I’ve decided to do is break up the things I’m thankful for into a series of posts (as of this writing, I haven’t decided how many).

Today I want to express for an important place in our lives: Levine Children’s Hospital.

LCH

I often joke with people that LCH is our home away from home, at least it was during Nolan’s first year of life, between 2 surgeries and the occasional admission.  Lately I’ve been reflecting a lot on LCH and how much it’s meant to us.  If you ever go there, it’s actually a pretty cool place: it’s bright, cheery and colorful with chairs in the lobby that look like bacon and lots of fun art throughout the building.  The staff is friendly and there’s even a radio station in the lobby where lots of well-known recording artists come to visit.  It’s a cool place, even though no one really wants to be there as a patient/family member.

We had so many staff members there who treated us and Nolan was so much dignity and kindness.  I will never forget nurses going above and beyond to ensure Nolan was so well cared-for: not just medically, but as a human being.  They would give us meal tickets daily to make sure we could get something to eat, they would stamp our parking passes so we didn’t have to pay for parking, the doctors would include us in daily rounds.  They answered my phone calls and my questions, whenever they were asked.  They held conversations when appropriate, and turned down the lights and let me sit quietly with Nolan on those evenings when I was just plain exhausted.  It is a special place and I can’t speak more highly about Levine Children’s Hospital.

I’m lucky now that I can work next door to LCH, so I’m in an out of there whenever I can, and I help them with whichever program I can.  I do that because I’m proud to be affiliated in any capacity with Levine Children’s Hospital, but I do it moreso because of all they did for us and for Nolan.  It’s my way to give back.  In fact, this Halloween I had the opportunity to participate in a Halloween Carnival at LCH where the patients and their families can come trick or treat right there in the hospital.  I was so on that, because I know what it’s like to be in the hospital during holidays (Christmas and New Years, in our case) and I know how surreal it makes things.  And I really appreciate how hard the LCH staff works to bring some normalcy to kids’ lives.  But I needed a costume because, I mean come on, it’s a kids hospital…you HAVE to dress up.  Then it occurred to me: I am going to dress up as Dr. Peeler, Nolan’s heart surgeon!  I got a picture, made a mask, got some surgical scrubs, and even had some help from a Nurse Practitioner in borrowing Dr. Peeler’s actual lab coat:

Peeler Costume

Yeah it was funny and a lot of the LCH staff were really tripped out by the Peeler look-alike.  It was fun, and I participated in the event for the kids and their families.  The costume was a silly way for me to thank Dr. Peeler for everything he does for heart kids and our Nolan in particular.  We are so dependent on his skills.  Again, thank you Dr. Peeler!

We’ve been really blessed to have seen Nolan making some really wonderful strides during the 2nd half of this year: walking, eating more by mouth, being more vocal, even starting preschool one day a week.  These are some major steps he’s taken to becoming all Nolan can be. When I lay Nolan down to sleep at night, I always try to take a moment to just watch him and take a moment to admire how far he’s come.  I just want to use this post to say thank you to the staff of Levine Children’s Hospital…keep on being the best.  Because every night I get to lay Nolan down for bed means one more day I got to spend with my wonderful son.  And we get that time with Nolan because of your work.  I know sometimes you get really tired and stressed and it can be emotionally taxing…but from the bottom of my heart I appreciate your work to give my son his life and to give us an opportunity to see him thrive.  That means so much to me and if I could I would walk the whole building to personally thank everyone who has worked with us for their smiles, empathy, professionalism…heck, even for the chocolate milk in the nourishment rooms (SO good).  Every moment we make with our son is because of the hard work the LCH staff put into him.

So this Thanksgiving…each and every day…whenever I lay this sweet boy to bed, I want to thank you…

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The HEARTest Yard

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Early on in this blog you recall that I wrote a post about Greg Olsen from the Carolina Panthers, who also welcomed twins a couple months before we did.  One of his twins, like Nolan, had Hypoplastic Left Heart System.  Greg has been an incredible spokesperson and advocate for CHDs and HLHS, and it was really cool to have him right here in our city.  While we were in Progressive Care with Nolan post-cath, I saw on twitter that Greg would be doing a presentation there at Levine Children’s Hospital.  I tweeted Greg and asked if anyone could come and he said yes.  So while Bekah was working on discharge with Nolan, I went down to the lobby to check out the ceremony. 

Most of the cardiac team was there, including a lot of Nolan’s doctors and his surgeons and nurses.  The media was there too and some other heart families.  I just hovered around the back trying not to get in anyone’s way…plus I just spent the night at the hospital so I looked like a complete wreck and I didn’t want anyone to think I was just some crazy person who stumbled into the lobby.  I did get to meet someone named Casey who was a heart mom and her son Murphy, who also has HLHS.  It occurred to me that Murphy was the first HLHS kid I had actually met.  And he looked GREAT!  Completely healthy and cute.  I got to chat with Casey for a little bit about Nolan and how things have been going so far.  I also got to see Nolan’s surgeon, Dr. Peeler.  I was actually really excited to see him and I said, “Hey Dr. Peeler!”  He said hello and moved on.  Good enough for me.  Then the ceremony started.

It began with someone from the Carolinas Foundation talking about Greg’s family and their willingness to support LCH and the heart program.  Next up was Dr. Peeler:

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He talked about his experience with HLHS and particularly how the “interstage,” which is the period of time between the 1st and 2nd surgeries, is very critical.  He said that the staff at LCH managed to get HLHS kids to survive via the first surgery…now he wants to ensure that HLHS babies THRIVE after their first surgery.  I was fascinated.  This was good stuff.  He talked about how Greg Olsen’s efforts have allowed them to develop a program called The HEARTest Yard, which will help parents financially with in-home nursing care, physical therapy, speech therapy, etc., during this interstage period.  You know, I was SO thankful to have Dr. Peeler as Nolan’s surgeon…I knew he came with a lot of credentials and recommendations, but it wasn’t til this moment that I realized that not only did he know what he was doing, but Dr. Peeler REALLY cared about the kids he treats…he doesn’t just want them to survive, but to thrive…and he realizes it’s a team effort.

Next up was the man himself:

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Greg Olsen came up and spoke about all the fundraising they did to help develop The HEARTest Yard (over $230k!!!).  He talked about how he had dinner with Dr. Peeler and said “You’re the expert…so how can I help?” and Dr. Peeler laid out all his ideas about helping kids through the interstage process.  Greg proved to be very well-versed in the heart program and HLHS and I was really happy to have an ambassador like him in our corner.

After the ceremony was over and the big ol check was presented, I actually got an opportunity to meet Greg’s wife Kara.  I told her that we also had an HLHS baby that was a twin and she seemed genuinely excited to hear that since it’s not a common thing.  She was very nice and took quite a bit of time to chat with me.  Finally I got a chance to meet Greg and talk with him for a few minutes.  I told him about Nolan (he even said he remembered my tweet…yeahhh boy) and thanked him so much for everything he did.  He’s a nice guy…and big as a house.

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During all this, Nolan was discharged and he came downstairs with Bekah, who also got to meet Kara Olsen.  It was really nice that I got a chance to be a part of this.  It’s funny, Nolan’s cath was postponed twice and it kinda got annoying, but this time it worked out nicely.  It was good to meet other heart parents and feel the love!

Are You Sure???

I remember being at work one day when I got a call from the weird 1-390340928302984 number, which meant the hospital.  Usually these make me briefly nervous as I never know what to expect.  I answered and it was Nolan’s nurse, she was like “Hey Chris, Dr. Peeler would like to speak with you.”  I became more nervous because I was worried something had gone terribly wrong, I remember that I suddenly stood up in my seat in the middle of my office.  Dr. Peeler came on the line and was to the point: “I’d like to close his chest up and need your authorization.”  I was like:

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There was a long pause before I was like “Ummmm….so what makes you think he’s ready now?  I mean, this is the third attempt.”  Dr. Peeler gave is own long pause, “Well…….the swelling has gone down.  It’s as good a time as any.”    I sighed loudly and gave him the ok.  I figured that if anyone knew what he was doing, it was Dr. Peeler, but I just had my doubts due to the past 2 attempts.  Then I waited….and waited.  I definitely couldn’t concentrate on my work, so I decided to have lunch in the conference room with some co-workers in the hopes they’d keep my mind off it for a bit.  Yeah right, all I did was push around my food with my fork and my co-workers knew what I was waiting for.  Finally the phone rang: 1-3907239071241242114.  I jumped right up and ran into the closest empty office.  Before answering the phone I was like OHGODOHGODOHGOD.

It was Dr. Peeler.  “Mr. Perez, we successfully closed the chest.”  I was blank.  Say what?  The first thing out of my mouth was “Are you sure?  Like…are you SURE?”  As if Dr. Peeler is not some world-renowned pediatric heart surgeon but some dude off craigslist or something.  His answer was something like “Yes, he’s stable and it looks good.”  He could’ve easily said “Hey moron, I know what I’m doing, ok?” and I wouldn’t have been offended because I was PUMPED.  I thanked him a billion times before he handed over the phone to the nurse.  I thanked her too then excitedly called my wife.  We were both still a tiny bit skeptical considering the past attempts, but it was hard to keep in the joy.  I walked into the conference room, where my co-workers waited anxiously and I said two words: CHEST. CLOSED.  And they cheered.  And I was like:

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I couldn’t wait to get to the hospital that night.  The first big step post-surgery was done and he was looking strong.  I also realized that it was January 10th, which was Nolan’s one-month birthday:

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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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