Heart Catheter

Guys aren't supposed to cry. We're especially not supposed to lose it. You all know what I'm talking about...that uncontrollable sob that creeps up in the back of your throat like an AA meeting ready to vacate the premises because the coffee guy didn't show up.

We all have a front. I found out today that my front is my indifference. It was an interesting realization.

As I posted on Facebook earlier, the heart catheter procedure was delayed about 2 hours. That gave me ample time to be pissed off at something innocuous instead of admitting that I was incredibly scared about what my son was waiting to go through. It's so interesting how much more aware he is now. It definitely makes all of this a lot harder.


The poor little guy hadn't eaten for 16 hours when we finally were able to get him into his hospital gown and prepare for the surgery. I was hoping that I would get to scrub in and be with him until he was put to sleep, but the anesthesiologist gently made me aware that my being there would take complete focus off their primary objective: Jon Michael. I have a feeling that this wasn't the first time she played to someone's emotions so that her job would run smoothly. Can't say that I blame her.

Amanda and I were able to walk him down to the heart catheter O.R. This procedure was actually done at Stanford Medical which shares multiple entrances with LPCH (Lucille Packard Children's Hospital). When we got to the still swinging doors, we both kissed and hugged him and cried on him and handed him over to the able hands of the heart catheter team.

There really aren't words to describe how hard it is to walk away from your child...especially when you know something he or she doesn't. Like how they're about to get a catheter shoved up a major vein and have various dyes spurt into their heart so that pictures can be taken.

All things considered, everything went really well. We found out that Jon Michael will be a prime candidate for the Glenn Shunt that he is scheduled for on Friday. I have the distinct feeling that I'm taking this a lot harder than he is.


I finally broke down today. I had kept up a pretty good front and been strong for Amanda which, at the end of the day, is any spouse's job. Where one fails, the other must persevere. It's the only way a relationship works. Watching my son writhing on the recovery table, red as a cherry from screaming and having to have morphine shoved in his IV to calm him down...it wasn't the same when he was five weeks old. He was still a person...but he didn't yet have personality. Everything's changed, yet everything's stayed the same.

Life moves in mysterious ways. I guess all we can really do is make sure that we have a life vest when the canoe tips over.

As I type this, I'm sitting next to the little guy at 3West, the third floor of LPCH. Hopefully we will get to take him back to the hotel tomorrow night so we can spend some much needed face time with him before open heart surgery on Friday.

Thank you all again for your prayers and thoughts for Jon Michael. All three of us are blessed to have your support and love. We are still trying to raise some money for the hotel, since we really don't know how long we're going to be here and Ronald McDonald has pretty much ruled out any chance at our staying there any time in the next month, so if you know anyone who might want to donate or you'd like to post this blog on your favorite social media site, we would be very appreciative.

I hope you all have a lovely day tomorrow and we will keep you updated on his surgery schedule.

~Jeff Martin

Pre-op with the Heart Catheter Team

Went down to Lucille Packard Children's Hospital today at 12:30pm for Jon Michael's pre-op with the Heart Catheter Team. He was teething and fussing all night so we knew we were in for a long day. When we were making the turn onto the hospital campus, we both simultaneously let out a sigh...it seemed like a year since we'd made that turn yet seemed like yesterday all at the same time. Either way, it's a heart-breaking turn to make.

Unloading the little guy into the stroller, we enjoyed the warm Palo Alto sunshine on the short walk up to the hospital entrance. Admittance was fairly quick and then we headed over to the Cardiac Intake Unit. He weighed in at 13.2 lbs and is about 25" in height...long? Seems weird to measure someone that can't stand in height. Seems weirder, I suppose, to measure him like a reptile. I still say 25" long.

Next was an echo cardiogram. It took quite a while for the technician to find his shunt which, according to Amanda, happens from time to time. After about a half an hour, Jon Michael was pretty much over listening to Pachabel's 'Canon' and getting his chest pressed on by a gel-coated probe, so he started screaming. Amanda got him to sleep and the technician was able to finish up in peace.

Another technician came in and did a quick EKG. After that we got debriefed by one of the members of the Heart Catheter Team. Basically the plan is to bring him in tomorrow at 9:30am. They're going to let me follow him all the way into the operating room in scrubs and stay with him until they put him under. The procedure, barring complications, should be about 4 hours, after which they will discharge him up into another part of the hospital called 3West for overnight recovery. We have been assured that tomorrow afternoon we will find out the results and they will be able to confirm that he is still a good candidate for the Glenn Shunt that he is scheduled for on Friday.

Amanda and I think it's important that you all share this journey with us as much as possible, so I'll post again tomorrow night with pictures and updates. We'd also like to take this time to thank everyone who has donated and made it possible for us to stay here with our son during this difficult time. You are all amazing friends and, as far as I'm concerned, you're all family now.

Please have an amazing evening and a beautiful day tomorrow! Also, feel free to re-post the link to this blog on Facebook, Twitter or whatever sort of social media poison you prefer. We're still trying to raise money on the link to the right, so any re-posts would be much appreciated!!!

Much love,

~Jeff Martin

Hotel Stay in Palo Alto

Hello everyone, we're down here at Palo Alto for our son's next surgery this week and it doesn't look like they have room for us at the Ronald McDonald House. So we're trying to raise some money for hotel costs. If you have anything to spare (even a couple bucks would help!), we would be so grateful.

It's as simple as clicking the 'Donate' button to the right of this window. This money goes into a PayPal account which we can use to fund the hotel room until (hopefully) a room opens up for at the Ronald McDonald House.

Thank you so much for taking the time to read this and thank you again to everyone who has helped us along the way!

Jon Michael's Story

About 5 months into our first pregnancy, my wife, Amanda Martin, and myself, Jeff Martin, found out that our child had a congenital heart defect called tricuspid atresia with a ventricular septal defect. Our excitement for our first child quickly turned into a variety of other more negative emotions, including fear, anger and a sense that things like this just weren’t fair. After consulting with specialists, we learned that he would need to undergo a series of two to three surgeries before the age of 4. We decided to put aside our negative feelings and embrace the fact that we were bringing a new life into the world, despite our fears.

Amanda had a fairly normal pregnancy, all things considered. We were blessed to receive the most excellent care in the world from the pediatric cardiology team and the specialty neo-natal team at California Pacific Medical Center (CPMC) in San Francisco. On March 3^rd, 2011, at around 10:00am, our beautiful son Jon Michael Martin was born in an uneventful labor. He was whisked off to the Newborn Intensive Care Unit (NICU) and, at about 15 minutes old, began his first echo cardiogram.

The diagnosis was confirmed. To explain in more detail his condition, I’ll provide a brief explanation from the Seattle Children’s Hospital Heart Center that was posted on Wikipedia:

“Tricuspid atresia is a form of congenital heart disease whereby there is a complete absence of the tricuspid valve. Therefore, there is an absence of right atrioventricular connection. This leads to ahypoplastic (undersized) or absent right ventricle. This defect is contracted during prenatal development, when the heart does not finish developing. It causes the heart to be unable to properly oxygenate the rest of the blood in the body. Because of this, the body does not have enough oxygen to live, and steps must be taken to keep the child alive. Because of the lack of an A-V connection, an atrial septal defect (ASD) must be present to maintain blood flow. Also, since there is a lack of a right ventricle there must be a way to pump blood into the pulmonary arteries, and this is accomplished by a ventricular septal defect (VSD).

Blood is mixed in the left atrium. Because the only way the pulmonary circulation receives blood is through the VSD, a patent ductus arteriosus is usually also formed to increase pulmonary flow.”

We were hopeful that Jon Michael would not need to undergo the first surgery, known as the Norwood Shunt. Unfortunately, a few weeks after we brought him home from the NICU, his oxygen saturation levels started to drop and it became apparent that it would be necessary to perform the first shunt. On April 5^th, 2011, he was admitted to The Lucille Packard Children’s Hospital at Stanford University and was operated on by arguably the most venerated pediatric heart surgeon in the world, Dr. Mohan Reddy. The surgery was a success and Jon Michael recovered in the Cardiovascular Intensive Care Unit (CVICU) at Packard for about two weeks. He was then released to CPMC for a few days to finish his recovery and we were able to take him home again.

There have been some ups and downs since his surgery; primarily, he has had a hard time gaining weight but the problem is being corrected with a feeding tube and some creative formula mixes. As long as everything proceeds as planned, he is currently scheduled to have the second procedure, known as the Glenn Shunt, on August 5^th, 2011.

When Jon Michael was conceived, I had recently lost my job and Amanda was working part-time. We were fortunate enough for Amanda and Jon Michael to qualify for Medi-Cal and another state program known as CCS. CCS took care of his first surgery and will be taking care of his second surgery as well. We will be eternally grateful for these state programs and how they have helped our family.

In a twist of fate, shortly after Amanda and Jon Michael qualified for Medi-Cal and CCS for a year, I got a new job. Fortunately or unfortunately, depending on what day we think about it, we will be enrolled in my company’s group health plan this October. Our predicament is one that I would imagine is common in America these days; even though I am the single income in the household as Jon Michael needs Amanda as a primary care giver, I make too much now to qualify for any of the assistance that has helped us thus far but I don’t make anywhere near enough to deal with the deductibles and co-pays that loom in our future.

This is where our story has taken a magnificent turn. When Amanda’s personal trainer, Josh Cox, found out about our situation, he started a grass-roots movement of support for our son’s plight. There really aren’t words to express how Amanda and I feel about this support. It is overwhelming, beautiful and breath-taking. With this amazing community of loving people behind us, we are about to start a series of fundraisers. The proceeds from the fundraisers and any other donations that come to us will be put in a charity savings account that we are in the process of converting into a full trust fund. It has been set up with the specific intent of paying for any medical costs that arise from Jon Michael’s condition but will also help us with the myriad of other hardships that arise when caring for a sick child.

We really didn’t expect such a large response so quickly. We are still in the planning stages of a silent auction fundraiser, which will be the main event that we are planning, but we are thinking about the beginning of next year. As soon as things are more hammered out, we will be posting on this website as well as through a variety of social media outlets.

Thank you so much for your love and support.

~Jeff Martin