Thursday, August 20, 2009

My son's story -- Part 4

The final chapter, continuing from above:

The next few days were a blur of more tests, more proof that he was back (he still couldn't remember the day of the race but remembering all kinds of things), and a move to the CIU step-down unit and then to a private telemetry room. He was stable and recovering but a bit sad and scared as the reality of his situation settled in.

His leg is still open from the fasciotomy with a wound pump affixed, and he will require surgeries to debride the dead muscle and to put a skin graft over the two openings....he doesn't have much feeling in the lower leg and can't really move his toes yet, but the blood flow has improved so much he won't even lose a part of a toe, let alone his forefoot.

After an MRI, a CT scan, and a contrast angiogram, they discovered without a doubt that the attack was caused by the pinching of his anterior descending coronary artery...the fix is most likely a single bypass that should remove all risk of a recurrence going forward (pending reviews by a few other cardiologists at other renowned hospitals), but that surgery will have to wait until the leg heals a bit and he is done with rehab. He is on the road to improvement and I am so thankful he is here to hang out with me still.

So here are the last few links in his luck chain...the clinical ones:

There are 6,000 hospitals in the country....only 300 or so have the Arctic Sun technology to lower a patients temp accurately and in a monitored way...and the hospital he was brought to is the only hospital in our area with the machine...that 24 hours of cooling helped protect his brain function, but as importantly they believe, helped keep his leg healthy enough to survive the surgery and let the blood flow return almost to normal.

There are 6,000 hospitals in the country....only 100 or so have the TandemHeart and ECMO combo technology and the experience to use it...the hospital he was brought to is the only hospital in our area with the technology and a doctor who can use it - the interventional cardiologist they pulled in that first weekend is the only one at the hospital who has used it...in fact, he is the one that brought the technology with him when he came to this hospital a year ago...there is no question the time and support the combo intervention provided allowed my son to live through that first night critical night....

The parent/doctor who stayed with my son for the first 72 hours is one of the top surgeons in this city, and he was so emotionally invested in my son's care that he called in a bunch of favors to get the right vascular and plastic surgeons to be put on his case, and he called the head of the renowned rehab centers in the area to "encourage" them to take him on for inpatient rehab on his leg…his constant attention and compassion pulled us and my son and the other doctors and nurses through the first tough few days.

My son is receiving absolute top-notch care from the only place in the area that could have saved him, but was by luck, not by any “consumerism” on our part - we didn't Google "teenage arterial switch survivor with heart attack" or pull up HealthGrades to find the best hospital or doctors to treat him....we have benefited from the kindness and skill of a community of health care providers affiliated with a hospital that was uniquely situated to help him, but the only choice we had in this was what hospital to drive him to.

I don't know how often this kind of story happens in the U.S....or how much our connections the parent/doctor helped us get to the right place at the right time for the right care from the right providers...I want to believe we experienced a normal level of care or attention, but I don't know if another 17 year old would have been swarmed by a whole hospital of care givers and given a chance to have the best people available help him purely by luck...it scares me a bit to think how different this would have turned out if we hadn't landed at this hospital...if he hadn't collapsed at a meet at his well-prepared and wonderfully staffed school....if all the random and independent coincidences and factors hadn't lined up perfectly, in the right order, to create the chain that kept him alive and now thriving.....it is amazing and scary all at the same time.

His story isn't over....but the trajectory of his recovery and the continued excellent care he is receiving gives me a significant amount of hope that this will all have a very happy ending....

17 comments:

Anonymous said...

There is no reply to this story. It shows that doctors and hospitals are only part of these miraculous recoveries and the rest is luck???

I wish him the best recovery.

Thanks for sharing.

Anonymous said...

As a mother, this story brought tears to my eyes. As a physician, it illustrates a point just now being recognized in our profession, in pediatric oncology as well as for young people born prematurely or with anomalies as described here: They must be followed in lifelong fashion, for unexpected complications may develop, especially with successfully treated pediatric cancers.

nonlocal MD

Swati said...

I wish the young man all the best. And yes, so much is luck - so many tiny random junctions where life turns. Even in the best of hands, things can go wrong, and in the worst of places, life can be miraculously restored too.

Jerry said...

It ain't over until it's over, but so far, so good.

I'm glad you shared this story because, in the end, we're not really talking about health policy options or saving 60 seconds on the workflow for routine admissions or whether balance billing is greedy or just something that's gotta happen for practitioners to make ends meet.

We're talking about what can often literally be matters of life and death.

We're talking about human lives, families' lives.

My own opinion - take one variable out of the scenario that unfolded as described, and an entirely different outcome could have resulted.

Amazing and scary indeed, and it happens every day.

Terence Coughlin said...

As a parent, that was an emotional read. As a American health care consumer, that was a timely reminder of how fortunate we are to have access to such skill, dedication and care. As a human being, that was uplifting.

Thanks for sharing.

Aaron said...

Before becoming an administrative fellow, I was a certified athletic trainer at a small high school. My first objective when I started there was to get AEDs, as they are not mandatory in our state...so Kudos to the school for being as prepared as they were.
Now I just need to figure how to run to my next meeting teary-eyed!! Good luck to him and the family. God Bless!!

Anonymous said...

An overwhelming story. My best wishes to the family and my hope for the best for anyone in a similar situation.

pesha said...

This is why you do this blog, Paul.

The coursing of coincidence is beyond what fiction could create.

As a parent sitting with a child in the hospital, even as I type, I am undone by this story.

And, of it all, this sentence:
By now the waiting room at the hospital had about 60 people in it all for my son...

By posting this, now 6000 of us are in the waiting room, anxious for the next chapters as they come in.

Anonymous said...

Beautiful story. Unfortunately it would have been a different outcome for almost 100% of the rest of the world's population. This should not be a reminder of how "lucky" we are in the developed West, but rather of how far we still have to go so that EVERY parent's child can be so "lucky" as this one's.

I can't help but to simultaneously share in the joy of receiving a son back from death's door and lament the extreme gaps that exist in access to lifesaving healthcare services in our own country and across the globe.

I pray for his continued and speedy recovery!

NonniBella said...

This story has stirred many emotions that are still very fresh. My son and I spent 7 weeks this summer in the Hospital also.
My journal in hand...
I can say without a doubt..."My son was in the right place at the right time for the right procedures from the right providers"
My journal in hand...
I will pray for continued and full recovery for your son and family also...
Gratfully

The Dad said...

A quick update from the dad...

My son had leg surgery Tuesday to debride the dead muscle in his right leg and to check the viability of the remaining muscle - they took out about 10% of the calf muscle mass and saw some encouraging muscle reaction, but he still has no feeling in the lower leg. Last night, he had a high fever and now has an infection, so they are working on the best way to treat it so he can move forward with the skin grafts and ultimately rehab on the leg and then the corrective heart surgery.

There is also some debate on the most appropriate heart procedure - after 3 consults with other cardiac centers across the country, they are now leaning toward a coronary artery reimplantation vs. the single bypass....if so, he would most likely be transferred to one of the other centers in another city given his rare set of issues and abnormal heart anatomy - and in another ironic twist, the surgeon who performed the arterial switch 17 years ago is now at the center he would be transferred to, and would be the most likely doctor to perform the reimplantation.

I absolutely agree that I am extraordinarily fortunate that my son has been given the care and treatment he has received thus far, and that there are incredible disparities that exist not only across cities/regions in the U.S. but around the world. I also acknowledge that I have excellent health insurance and the means to focus only on him getting better - but I am just a bit curious about the cost of all this and the absolute chaos the billing process will be given the 6-7 specialities that have been involved in his care, not to mention the hospital charges and the possible transfer to another clinic in another city for the heart surgery and recovery process.

But that is a worry for another time. For now, I just want him to be better, out of pain, and back in the flow of his life as an active and curious and funny and secure young man.

The Canadian said...

What a tremedous story. I can't even imagine living in the US and having the cost of all of these treatments in the back of your mind while fighting to save someone you love. I am lucky enough to live in Canada. Say what you will about our healthcare system, but when you have an emergency (and I have lived through a few of them with various family members), you will not see anything like it. Hospital staff are able to do whatever they need to do to save someone, without a second thought. I think that even if they don't survive (which is what happened in some of my experiences), at least you know that literally everything possible was done to try and save them.

Paul Levy said...

Dear Canadian,

Actually, if you show up at the ER, as this patient did, federal law requires that you get full coverage, even if you cannot pay. The doctors and nurses involved treat you exactly the same as if you are fully insured. In fact, they are unlikely to even know what your insurance status is.

One of the ironies of the US system, no?

Anonymous said...

To the author, I wish your son the best recovery. But to address your question, the service you received was far from standard. Yes, you benefited tremendously from connections. If your son had been a student in inner-city NYC or Baltimore, he very well would have lost his leg or worst yet, died. This is part of my general sadness about healthcare: people are "created equal," but treatment is far from equal. And even with all the reform in the world, this doesn't change that fact. So, I do feel happy for you and your family but a part of me is also bothered by this story in that your life circumstances allowed you to receive this exceptional care. And that to me is not "created equal." I think it's also important to note how great surgeons were able to come to your son's rescue because of their emotional investments. It's sad to think that with healthcare reform, many of those same surgeons are less inclined to rescue illegal immigrants or low income patients. Just look at the opposition to the President Obama's public insurance from prominent doctors. Of course, medicine is not charity work but again--to return to your question--the service you received is far from standard.

Rachel Labas, Signature Healthcare said...

Yay! The Arctic Sun. Our hospital just acquired one of these, and already in one weekend was used to help save several lives. Being in PR, I didn't know much about induced hypothermia, but after sitting on the inservice and listening to patient survival stories, I believe this is something every hospital should consider. Although more expensive than ice packs and blankets, it seems much easier to control (and is totally cool technology). Best wishes for continued recovery to your son.

Anonymous said...

Thank you for sharing this story. As a member of the medical device industry, it is great to heart the patient's story after explant of life-saving devices. Often we only get a tiny snapshot of the hospital course. This gave me some much needed inspiration in the health care industry as a whole. As for the comment posted by the Canadian....TandemHeart is not available in you country to my knowledge.

Anonymous said...

I do hope this young man survived his ordeal and is doing well today. I too had a Coronary Artery problem for which I had open heart surgery in 2007. Previous to the operation I was having severe chest pains, like heartburn, during the late hours of the night. After walking the pain, which I thought to be gas off, I would go back to sleep. One morning the condition didn't occur until I was up and with the chest pain my left arm began to hurt. My wife rushed me to our doctor, which happened to be in our hospital. After blood testing a slight heart attack was proven. An angiogram was done next day and it was discovered that I had two distinct pinches in my Coronary Artery. Allergic to aspiring and the fact that we lived 45-minutes from the hospital I elected open heart surgery. Afterward my surgeon said that I had a "hereditary defect".

Eventually I learned that whatever it was going over my artery was pinching it in two places. During normal days my blood pressure was high enough to keep blood flowing in sufficient quantities to supply my heart's needs. However, at night my blood pressure would drop and that would allow the crossing vessels to press down on my artery and pinch off the blood flow to my heart. One month later my younger brother experienced the same symptoms and an angiogram disclosed the same "hereditary defect". I am 75 today, FEB 2014, and my brother is 8 years younger and we are doing well. Not much has been written on this kind of "hereditary defect" heart problem, but many die young because the symptoms are usually ignored or treated as my family doctor did me...for indigestion...instead of investigating the cause instead of the symptom and taking the right action...