He's finally in surgery!

Quick post: Nick went into the OR at approximately 1:35pm. Looking at a 3-4 hour surgery. Will write up another post about our experiences this morning. Thanks, all!

Countdown

Ok, folks, surgery is set for 11:00 a.m. Thursday morning. Nick will be surrounded by family at the hospital and one of his best friends will be there until they call him (and me and Michael) into the prep area.  We know that all of you will be with him in spirit and we thank you immensely.

I'll be updating throughout the day. Automatic updates go out around 9:15p.m. no matter how many I post during the day. I'll see if I can send those out manually, but if you don't get anything during the afternoon please check back to the site directly.

Thanks and love,
~Jeannette

Two days to go!

Wow, this past week has FLOWN by, I can't believe we're two days away from surgery!

When last we met I promised you information about giving blood towards Nick's surgery, if you were interested in participating. With all we've been through in the last 6 days we flew past the deadline for giving, so thank you to those who were considering, I'm sorry I missed that opportunity. However if you are interested in giving towards other amazing kids that are going through procedures, please check out Childrens Hospital Los Angeles' Blood Donor Center online or at (323) 361-2441.

I'm happy to say that the reason the past week has flown by is because we've been having a lot of fun! From playdates to a trip to Legoland yesterday, Nick has been busy. As soon as I figure out how to size photos from my phone I'll post some from Legoland. :)

I do want to take a moment to acknowledge two people. Dr. Danelle Fisher has been Nick and Sabrina's pediatrician since before day 1. We met her when I was still pregnant with Nick and we still credit her as the one who saved Nick's life. She acted quickly on the fact that she heard a heart murmur (where I've heard stories of other doctors "waiting a while") and Nick was given amazing care that saved his life. We've adored having her as the kids' physician. Sadly, we had to say goodbye professionally because our insurance situation changed. However she is still a part of our family and we love her!

In finding a new pediatrician that worked with our current needs for 1) insurance, 2) cardiologist and 3) Childrens Hospital Los Angeles, we found Dr. Lawrence Sher. He comes to us highly regarded and suggested by many families we know. Nick met him last week and they got on well. I loved him immediately because when I mentioned Nick's cardiologist, Irving Tessler, Dr. Sher said he is good friends with Dr. Tessler's partner (whom Nick has also seen on occasion and we trust implicitly),  and Dr. Sher sends all of his potential cardiac patients to that same practice. Just so you know, I didn't know that going in. Perfect! Welcome to the family, Dr. Sher! We're excited to have you take care of our kids!

Thank you to all who have sent prayers, well wishes, good energy and thoughts Nick's way. If you are just joining us now on the journey, check out our first 2 blog posts, "Nick's Story" and "The Journey Begins" to catch up with Nick's backstory and what has happened so far.

Tomorrow (Wednesday) is pre-op: blood work, x-rays, etc. in the morning and in the afternoon we will find out what time Nick's surgery will be on Thursday. I'll post that tomorrow and any other details as soon as I know.

Until tomorrow!

With love, gratitude and hugs,
~Jeannette

The Journey Begins

Last Thursday (August 2nd) Nick, Mike and I met with Nick's surgeon, Dr. Vaughn Starnes at Childrens Hospital Los Angeles (CHLA). Dr. Starnes is a rock star in the Cardio Thoracic surgery world. He's done all 3 of Nick's surgeries and we're blessed to have him work on Nick again.

When Nick was born, he was a pretty serious case, medically speaking. I've kept in touch with folks at CHLA over the years, particularly Barbara Gross, Administrator of the Heart Institute at CHLA and they've remembered Nick whenever I've been back. But Nick has not actually been back to CHLA until last week, yet the people who were there when he was a patient remembered him - and welcomed him warmly. It was so beautiful to see this reunion - the nurse, Alma, from the Cardio-Thoracic Intensive Care Unit (CTICU) who cared for him the night before his first surgery as a newborn when he was VERY sick, was almost in tears as she gave him a hug these [almost] 11 years later.

Nick felt good about that. Then Dr. Starnes described what would be going on during the surgery and answered Nick's questions with forthrightness tinged with humor, which helped. From the first blog entry you may remember that Nick has a cadaveric valve in his pulmonary spot. It's size is approximately 9mm and it needs to be replaced for a larger one. Next Thursday he will go through full open heart surgery and they will remove the 9mm valve, replacing it with a 16mm valve which will last approximately 12 to 14 years. Another great thing about this new valve (other than it will fit his body needs better) is that it's big enough so that the next replacement procedure can be delivered via his vein in a catheterization lab, meaning no open heart surgery next time! But I'm getting ahead of myself, that procedure is over a decade away... still exciting, though!

After meeting with Dr. Starnes, Barbara asked us if we would be willing to speak with a family across the hall who have a 3 week old who is about to go through the same surgery Nick had (the Ross Procedure.) We all said yes, including Nick and it was a great experience for all of us. The parents spoke directly with Nick, asking about his activities and how he feels and Nick answered honestly, "Well, pretty much like any other kid, I run, play basketball and stuff and if I play too hard then it gets hard to breathe a little so I stop for about 2 minutes, drink some water and go back to playing." Then they asked about his scar, and Nick being the trouper he is, lifted his shirt and  just showed his scars, which they were excited to see had healed so well. It was an empowering experience for him, sharing his experiences and for the other family to see a child almost 11 years after the fact who is doing so well, which I believe gave them hope and a little comfort.

And that's not all! At CHLA they have staff members called Child Life Specialists who talk with older kids about the procedure they are about to go through. Though they usually speak with patients the day before surgery, I asked for a meeting last week and Christina met with Nick. She saved the technical stuff for next Wednesday (pre-op day) but instead gave him a tour of the rooms in CTICU and on the CT floor where he would be after surgery. She did a great job of explaining what to expect after surgery when he wakes up including all of the machines that he would be hooked up to and seeing when he wakes up in the CTICU.

He understood and took it okay. Then she pointed out the t.v. which has unlimited movies and internet access to play games. Then the smile on his face started growing bigger, especially after finding his favorite movie. Then she showed him a room in the CT wing that he would be in after the leaving CTICU which had less machines, but again, a t.v., this time with a touch screen. Smile got bigger. Finally, she showed him the playroom, which is open 2 hrs a day and is fully stocked with boardgames, computers and his newfound love - an XBox (which he only gets to play at his friend's house.) The smile was all out huge and he was digging the idea of a hospital stay at that point. Now we're not advocates of tons of media or gaming, but if the thought of it all helps Nick to go into this with a more positive outlook then it's okay with us.

All in all, it couldn't have gone better last week. Oh, and then I remembered that CHLA has a dog therapy program where you can request a visit from a specially trained therapy dog in your hospital room and Nick was interested in that, so we found out the particulars and it's on the to-do list once he's out of CTICU.

In my next entry I'll let you know about the particulars of giving blood if you are interested (and local, of course.) Until then, please keep sending your prayers, positive energy and thoughts! Thank you!

Nick's Story

Hi, all. So as you know by now, Nick is having open heart surgery to replace a valve on Thursday, August 16th. We've known for years that this day was coming and it's finally here. Many of you don't know Nick's story, so that's where I'll start with this blog.

Nick was born Sept. 16th, 2001, just 5 days after the 9/11 tragedy. With so much going on in the world, it was amazing that our prayers were heard and our little baby boy was given the miracle of life. He was born with Critical Aortic Stenosis, a condition where the aortic valve (the valve in charge of pushing oxygenated blood out into the body) is too tight and not enough blood can get through. We had no idea about this condition until he was a day old. He was transferred from St. John's Hospital in Santa Monica to Childrens Hospital Los Angeles (where Jeannette coincidentally had been working as a fundraiser since the previous December) where he was a patient in the CardioThoracic Intesive Care Unit (CTICU) to get him healthy enough to even survive a surgery, as his organs were already beginning to fail.

When he was 5 days old, Nick underwent his first surgery, which somewhat opened up the valve to allow for more blood to go through and begin getting him healthier for his next surgery which would actually correct the situation. 7 weeks later Nick underwent his 2nd surgery, known as the Ross Procedure. This procedure is known as a double replacement because it removes the aortic valve and replaces it with your own pulmonary valve. Then the pulmonary position has a cadaver or pig valve placed into it. This is done because the aortic valve is the most important valve that has a lot of pressure on it, so when possible you absolutely want your own tissue in that spot so that you don't have to worry about your body rejecting foreign material or tissue.

The thing about cadaver and pig (porcine) valves is that they are sterilized, non-living tissue. Therefore, they do not grow and eventually wear out or get obstructed. When Nick was 22 months old he had his 3rd surgery to patch open the cadaver valve because one flap of the valve had folded over onto another, causing an obstruction. But it was repaired and Nick was in the clear for what we knew would be a few years.

At that time we were told that the average time this valve would last is 3 or 4 years, so expect Nick's next surgery at around age 5 or so. Since then we've waited, and waited, and waited. Around age 6 we thought the time was approaching, but then nothing else changed, so we continued waiting. The way we tracked this was by visits to the cardiologist every 6 months. They monitored/measured the outflow of blood through the valve via a sonogram called an Echocardiogram.

Back in December of 2011 during our visit to the cardiologist we got the news that it was time to consult with the surgeon. After months of going back and forth with our medical insurance we finally got the appointment with Nick's regular surgeon at Childrens Hospital Los Angeles this past week and he confirmed that Nick indeed needs the surgery now. So here we are a week and a half out and Nick is being a rock star about it all. Tune into the next post for the details about this upcoming surgery.

Thanks for your support and love!