The Man Himself

The Man Himself
Contemplating the Universe with the help of a cotton candy beard.

Sunday, August 19, 2012

We're heading home!!!

Yes, Nick got the green light to go home today!! Just waiting on medications and discharge papers to be signed. WooHOO!!

More later when we get home. The good news is that as much as he'll be taking it slowly over the next few weeks, his life will be pretty normal.

Okay, off to the pharmacy, more later tonight!

Thanks and love,

Saturday, August 18, 2012

What a difference a day makes!

From our last post, today's goals were:

Remove chest tubes: Done
Walk down hallway on his own: Done (a few times)
Play in Playroom: Never opened, but he would have been there!

Other great milestones today:
IV removed
All medication is now given orally
Eating and drinking what he wants
Sense of humor returned
Breathing is getting stronger
Played on XBox and remembered it!
Learned a new card game and was clear headed enough to remember the rules
Described pain as being a 1 on a scale of 1 to 10 where 10 is the worst pain ever felt personally.

As long as all stays the same and the fluid continues to drain out of his chest as it has been, Nick is coming home tomorrow! (Sunday!) I will post tomorrow as I know more.  Go, Nick!

Thanks everyone, for keeping up the faith!


Long Night, Long Day...

Okay, for starters, Nick is doing great. Thank you for all of your messages, thoughts, texts, prayers, etc. They are appreciated and working!  Thank you also for your prayers for Phoenix Baby! He did better Thursday night and was having a good day Friday the last I talked with his dad.

I can't believe it's already after 10 pm Friday. This day has been one of those crazy ones where you turn around and say "WHERE did the time go?" Sorry that I didn't update at all, but in this case no news was good news. I was constantly bedside with Nick and use of the laptop or cell is restricted to 6 feet away, so I made the choice to be near him.

Nick was brought into ICU just before 6pm Thursday night. He was already coming out of the anesthesia and that stuff kept us all on our toes the whole night and a good portion of Friday. As usual with anesthesia, the brain is coming out of a DEEP fog, and with Nick it took a long time. He would wake up and fall back asleep asking the same questions and we learned quickly from his fantastic nurse Alisha to calmly give the same answers over again and eventually he would remember.

The hardest part was the anxiety that accompanied this period. It's still there to some extent friday evening. Nick didn't remember going into surgery and would ask when it was going to happen, if it was over, why did he have wires and tubes on him and could he drink water over and over and over again.  He couldn't have water for hours because of the potential for throwing it back up so we had to make due with mint tasting swabs (small sponges on a stick) dipped in ice water that we used to swab throughout his mouth. By midnight we were giving him small sips and that helped a bit. But mostly this question and answer routine was repeated every 10-25 minutes throughout the night. Mike stayed over and God bless him, he was exhausted when I arrived Friday morning after spending some time with Sabrina.

Friday was actually mostly good, even though it was a constant up-down day for me at the bedside too. Nick got to eat  around 11:30 am (pancake, jello and juice) for the first time and kept being ravenous through the day. He tolerated food and by dinner time got to eat pizza. Granted, not the most healthy diet, but it lifted his spirits! He kept with the questions, just not as often, but it showed how strong the anesthesia was that almost 24 hours later he didn't remember some things, like the chest tubes - what are they for again? These are tubes with one end placed internally, one in the space between the two lungs and two others at the sides, to drain excess fluids. They then run out of the body as long, hose-like tubes attached to collection boxes with a suction that seems powered hydrolically that sounds like a group of boiling cauldrons so it gets pretty loud bedside. It's a love/hate relationship and Nick refers to them as his octopus tentacles which is an apt description as they go everywhere with him as he walks.

It's amazing experiencing this with a kid who can talk and give opinions. Nick's first 3 surgeries were before he could really speak (he knew a few basic words during his 3rd surgery but wasn't completely communicative) so they kept him much more sedated for comfort. Now they brought him out of the OR already with the breathing tube removed, which is great, but didn't allow for continued sedation medication, only for pain medication, which didn't help with resting.

Around 4:30pm Friday Nick moved out of ICU and into a room in the CardioVascular Acute floor. He continued getting more lucid, getting out of bed to walk to the bathroom, eating, drinking and playing the XBox. The Child Life Center found a travelling XBox for him to keep for the rest of the weekend and he's borrowing some games from his friend Max to help supplement the hospital's game library. Thanks, Max! :)

Nick has had most all lines and tubes removed except for the chest tubes for draining, IV for all meds and EKG stickers to monitor his heart function. His meds are down to pain medication which is weaning down to an IV Tylenol product (seriously) but with options for something stronger if needed, a stomach soother and antibiotics. He came out of the OR on only one heart medication, milrinone (spelling?), but weaned off that Friday morning. He did get one dose of IV Benadryl for itching at bedtime and thankfully it knocked him out for a good 5 hours, which was a God-send after not resting since surgery. He is doing amazingly!!!

It's about 7 am Saturday and today's goals are to have the chest tubes removed, walk down the hallway and Nick's personal favorite, to play in the Playroom. I'll be better about posting today since he's much more independent now.

Signing off from Nick, me and Tony Hawk (XBox version, that is)... Til Later!

Thursday, August 16, 2012

Please pray for Phoenix Baby!!

Hi all,

Your prayers and wonderful thoughts and energies have helped Nick come through so well. He is resting, a bit fitfully, but that is normal until the meds (anesthesia,etc.) wear off which should be in a few hours.

Please, please, pray for a baby that had a Ross surgery today, I'll call him Phoenix Baby since that's where he's from. His surgery went okay, but he's had a very tough day and is fighting right now.  Send him the same wonderful love you sent Nick, please!

Will update more as things progress.

Thanks and love,

He's Out of Surgery!!

Just got the call that Nick is out of surgery and heading to his room in the Cardio Thoracic Intensive Care Unit (CTICU). He'll be there for about a day. More later, I'm about to talk to his surgeon in a few minutes to go over how the surgery went. 

The complicated part is over...

Just got the call that the valve has been replaced, Nick is off the heart/lung bypass machine (which means his heart is pumping on its own again now) and he is in the "rewarming" period which is where his blood pressure is normalizing. He's still an hour to an hour and a half away from the end of surgery and being closed up, but the first phase is done! 

Still working on the post about this morning...:)

Keep the prayers coming! Thank you, thank you, thank you!


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!

Wednesday, August 15, 2012


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,

Tuesday, August 14, 2012

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,

Tuesday, August 7, 2012

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!

Saturday, August 4, 2012

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!