Our Journey With CHD

The Heart of the Matter - Full Documentary

noreply@blogger.com (Jen) — Sun, 05 Apr 2015 21:05:00 +0000

Pacemakers, MRIs, and Pumpheads that last a lifetime.

noreply@blogger.com (Jen) — Wed, 31 Dec 2014 23:56:00 +0000

J has a Medtronic Pacemaker that's supposed to be MRI safe. A few years ago when the "pump head" issues after the open heart surgery were a little concerning I opted not to get the MRI done after it wound up being a bit of a cluster - it felt like we had to call Medtronic, the hospital, the Mayor, get permission from the President...

We opted out. We'd been through enough, and the doctor admitted it was just a baseline. We just passed.

Well, it the last few months, the kiddo has gotten vertigo/dizziness spells, and so we shlepped back to the neurologist who absolutely needed an MRI (think tumor). This time it was a little bit easier as apparently there are more Pacemakers and more Medtronic guys running around, but not enough Medtronic guys around...

We enter into the clinic and are immediately met by the Medtronic guy. Now, I liked the guy, but no one had really prepared us for what the Medtronic guy would do, and J was a little nervous having watched some episode of House the night before where they put a guy in an MRI machine with metal and it shot out of the guy's body or some such thing. I didn't ask him why on earth he was watching that episode of House the night before his MRI, but he's 16. I doubt he could explain the wisdom of the decision.

What Medtronic does is what I affectionately call placing the Pacemaker on idle - he explained it as walling the pacemaker off, and setting it so that it beat at 70 beats per minute and that's it. It did not go up. It did not go down. He also explained, as he was doing this, that the readings showed that the kid was now 100% dependent on the Pacemaker and the Pacemaker was pacing for him 100% of the time. Not something you want to find out for the first time from the chipper Medtronic guy.

I realize I am not supposed to capitalize Pacemaker in that sentence, but I now give complete and utter respect to the Pacemaker at all times. In my vocabulary, Pacemaker now begins with a capital P.

After setting the kid's pacemaker on idle, where it would not go up and it would not go down, and his heart ticked so regularly you could set your watch to it, Medtronic guy left with assurances that his partner would be back after the MRI to re-calibrate my Bionic Child as soon as the clinic called.

MRI took 20 minutes. No one came back for two hours.

Kiddo described the pacemaker being on idle like being a fish who's water was low on oxygen - it wasn't quite panic inducing, but it sure as hell wasn't remotely comfortable. And he had to deal with that for two hours. I felt so bad for the kid.

I felt even worse when we went back for the results and the neurologist let us know he has damage to the right side of his brain in the border zone, the bilateral high frontoparietal regions, right occipital lobe, and right posterior temporal region. Oh, and cortical signal abnormality, though I'm not as up on my neurological impairments as I am on my cardiac impairments, so I'm still trying to figure all this out. There's also a small "focus" of white matter with T2 hyperintensity which is suggestive of a small stroke at some point in the past. The MRI report states it's from ischemia in the past, or a lack of oxygen to the brain.

Since he's never had a heart attack, this is likely mild acquired brain injury from one or more of the open heart surgeries. It explains a lot from the past few years, how the kid went from a whiz in school to feeling completely overwhelmed by it. Years ago, he talked about how to wanted to get a PhD because he just loved school so much.

Now, we feel like we'll be lucky to get him out of high school.

It explains a lot. It doesn't make it any easier. His life was going to be hard enough as it was, Pacemaker dependent, serious medical illness that's ongoing. I'm watching our goals for him change and flicker ... and some of them are just fading.

I remember after the last surgery the surgeon said there were a few moments in the surgery that were "touch and go". I was so exhausted after days of no sleep and fear and worry that I just didn't ask any questions about what that meant. I assumed it was the repair. I did not assume it was my child that was touch and go. I never asked him what that meant.

I probably should go get the surgery records and find out what that meant.

Haven't written for a while. Things are as they are.

noreply@blogger.com (Jen) — Fri, 22 Aug 2014 02:22:00 +0000

Haven't popped in here for a while - since January, in fact. I try not to think about this from a daily grind perspective; we've been living with CHD for fourteen years now, and every year, it feels like the same roller coaster of up and down. Some times are better. Some times are worse. Recording it over and over again, though, feels like writing about the same circle, passing by the same markers.

They're not, though. I don't know if I have just learned to take the gut punches with more grace, or I'm too exhausted and weary of them to panic anymore. But things still change.

The kiddo's last cardiology update wasn't good. The Cardiologist let me know that kiddo's left ventricle is stiffening, and I came home to Google the condition and learn all about the new thing threatening my kid. I looked up diastolic dysfunction and in searching for that, I learned that Wikipedia considers that a synonym for Diastolic heart failure.

OK, then. Breathe.

He has a new therapist, and as he talks to me about what he talks about and what he "works on", he often mentions that much of his work focuses on dealing with the knowledge that he will not have the life others will have. He will not have as many years, he may not have the same things, he may not live to get married or have children. He may die before he ever falls in love with someone. These are things he talks about and tries to come to terms with.

He made it to that place way before I did. That reality has always been somewhat unthinkable - I can say, verbally, to others that his disease is life threatening. I can say that a possible outcome is death - but it doesn't really touch me when I say it. Someone once said that I seem coldly dispassionate when I say it - and its not that I'm cold. It's just that I refused to believe it could happen.

I have always been afraid that we won't win this fight, but I have always felt somewhere in that deep wellspring of parental hope eternal that my fears were just that - fears.

Of course, we'll win. Of course he'll live. Of course he'll grow up. Of course he'll go to college, get married, find a career. Of course he'll bury me and inherit all my stuff. Of course he will.

That's the natural order of things and this little disease is just a threat, but one we fight hard, and one we'll beat back.

This last appointment was the first one that I left where I think I truly realized for the first time that we may not win. This isn't just a fear, it's a potential outcome. This thing is going to dictate his life - whatever he wants to achieve may be prevented by this, it will always be an obstacle. It may take him. I may, after all these years of fighting and after all this determination and travel and searching out doctors and hospitals and treatments, still stand over my son and have to tell him goodbye.

He is my only child, and the reason that I do almost everything I do. And this fucking disease may rob him of his very life, sooner or later.

It is the dark place I can barely look at, where the unfairness is almost paralyzing. While he talks to a therapist about how to live a life threatened, live a life shortened, how to come to terms with living always being chased by a shadow and to still live, I find myself full of unbelievable admiration for him - because I am not there yet.

It's the lump in my throat I can't swallow. The possible reality I can barely face. All those things I wanted for him, that I still want for him, that I don't know this disease will allow him to have.

Energy Expenditures

noreply@blogger.com (Jen) — Sat, 18 Jan 2014 02:00:00 +0000

Kiddo's Cardiology appointment is Wednesday. I don't even know what number this is. I stopped counting them a long, long time ago.

I also stopped panicking, though there's still that fear. As we grow older, as he grows older, as more and more of life intrudes and becomes more complex, these things become harder to define - the feelings all just roll together. It's hard to stop and name that one fear, that one anger, this one panic. It's just this conglomerate of feelings all bunched up that you know most normal people don't have and if they do, certainly not at the frequency you do.

I still love the phrase "extreme parenting". It so eloquently stated what parenthood feels like when running through a gauntlet.

So, another Cardiology appointment. The uneasiness is less about what we'll find, and more this time about whether I can handle what is found, and what must happen after what is found is known.

Yesterday, someone told me how amazed they were at how I, the person known to be stressed out most of the time, handled a crisis. They joked that I was someone of extremes - I am great when things are good, I am fantastic when things are at their worst. It's my gift, I guess - guiding everyone through the most stressful and terrible of crisis. Staying determined and calm and steady when all around you falls apart. Steering everything slowly, methodically back on course while white knuckling it, gritting your teeth, and keeping everyone calm. That's me.

It's not a talent I would wish on anyone. It's not one that you ever want to be practiced enough to develop. It's something I think every parent of a chronically ill child eventually becomes a master at.

But I also know when not to fight. I know when the battle is lost almost the moment it is. I have this sense, almost weird and preternatural at times, about when the wind changes. I know I have made my case, or fought the good fight, or tried as hard as I could, and I just feel in my bones that pushing further will gain me nothing. And so I bite back belief or desire or need or passion, and I stop. Doesn't matter anymore.

I often wonder if that aspect of my personality came from dealing with CHD as well. Of picking and parsing through what I can affect, and what I can do nothing about. Of learning where further energy expenditure is effectively meaningless.

I wonder which personality trait of mine will be needed on Wednesday.

Juggling

noreply@blogger.com (Jen) — Mon, 02 Dec 2013 14:56:00 +0000

This past weekend, I signed the kiddo up for private school to the tune of $2,000 a year - the home school thing without me at home was failing, and my husband needs outside help to keep the kid on track. Help I can't provide anymore because I commute 2 hours a day, and I'm exhausted by the time I get home at 8pm at night.

I keep adding it up - 10 hours a week, 520 hours a year. 21 days a year. 5.75% of a year. $6 in tolls a day, $30 a week, $120 a month, $1560 a year. 37.4 miles one way, 74.8 a day, 374 a week, 19,448 a year. Cost is $3,524.40 a year.

So, now I have $1560 in tolls, $3524 in gas, and $2,000 in private school tuition because I have no time, and the kiddo needs attendance flexibility due to his illness, and that 5.75% of a year commuting has taken was in top of the extra 5.75% I was already freely giving with my 50 hour weeks.

It's never extra, though. It has to be taken from somewhere, and I am running out of places to steal from.

Stop dragging my heart around.

noreply@blogger.com (Jen) — Sun, 03 Nov 2013 16:17:00 +0000

This weekend, folks we've become very emotionally enmeshed with have become engaged in a very serious fight. All I can do is watch from afar, and sit in stunned silence. I can bond with the caretakers, and remind them there's still a hope even if that percentage wanes. I can commiserate that financially, this will likely destroy all the gains they have been trying to make because its all happening just three months before they would have been able to get insurance for the first time as self-employed folks. Yes, it sucks. I sympathize. I empathize. I've been there.

The CHDer in the situation has been adamant up until a certain point that its not an issue. Caretaker to caretaker, that was one of the hardest things for my caretaker friend. "Why didn't you say something?" I can't even say anything back. I'm just as guilty.

After years of feeling worse after medical science took my gall bladder, I switched Doctors again - initially, I diagnosed myself as having digestive issues from having no gall bladder and that's why I felt awful all the time. Apparently, an internist was the key, as after having nearly every test under the sun, the doctor determined that no, it wasn't just that I was fat and hiding double-stuff oreos. My highly sensitive C-Reactive Protein was above three, indicating inflammation from something and a potentially high risk for cardiac issues and issues down the line. My Vitamin D was in the tank at 8, indicating why I went from rock climbing and hiking to barely being able to walk two blocks without my muscles screaming for mercy and my body ready for a nap. Last but not least, my Thyroid is - well, broken somehow. No idea what it is, yet. The C-Reactive Protein may indicate a deeper immune disorder. May not. Don't know yet.

I knew that something was different, not normal, and its been slowly getting worse for few years. The pain was more or less chronic, bone pain and muscle pain and exhaustion. It got worse. My body got more sensitive and what was once discomfort became painful misery. I pushed through it and kept going, gritted my teeth and tried to ignore it. It's what I had always done. I was proud of my ability to do it. The old doctor seemed to lay it all on weight, and a need to exercise further and eat better. I pushed until I collapsed.

This is perhaps one of the dumbest aspects of human nature. Pushing through it and thinking if you ignore it, it will just go away. Listening to someone you don't wholly trust because you're embarrassed. I pushed through it with defiance until I permanently damaged my body. Even with treatments for all of the above, there's much about my muscular-skeletal agility and functioning that I have lost forever, and I will never get it back.

And yet I can see how so many do it. My kid does it. Our friend does it. If we just push through it, just ignore it, just do what we can to control it, it will go away.

Amazingly, though that doesn't work for anyone, we just keep doing it.

Our Friends Won!

noreply@blogger.com (Jen) — Mon, 23 Sep 2013 04:43:00 +0000

In 2007, the kiddo chose to go to The Colbert Report for his Make a Wish. Actually, TCR was his second choice - his first was to go to Skywalker Ranch and meet George Lucas, but Make a Wish let us know that while he was welcome at Skywalker Ranch, George's people related that he didn't meet any Make a Wish kids. Ever.

While I do get he's rich and famous and all that, to be frank, we were a little astounded at the never meets anyone for five minutes anywhere, any time, regardless of what deadly childhood disease they have. At 8, the kiddo wrote Lucas off, and set his sights on Stephen Colbert. Yes, at 8.

Luckily, The Colbert Report said yes, as J's third wish was a tiger or something.

The husband and I trailed along as the folks at the show gave him the grand tour. Everybody there was so unbelievably genuine and nice that it was a little surprising - we knew that we essentially spent the evening being in everyone's way but you'd never know that from the way the kiddo was treated. Two folks in particular, Mark Malkoff and Tanya Michnevich, were incredible that night. Mark's stayed in touch over the years, but though Tanya was epic-ally sweet and incredible that evening and I always meant to write and say thanks, I never did.

Tanya showing the kiddo a light saber given to staff from George Lucas.

Tonight, TCR won their Emmy, and we were all so excited for them - and we looked up, and there was Tanya standing over Stephen Colbert's shoulder as he accepted. I couldn't have been prouder or happier for those folks.

The people at the show shook hands with us at the door, and off we went. Yet four years later when Jacob was dealing with another major crisis, they took the time to send him a care package that was literally on our doorstep when we came home from the hospital after his cardiac cath.

Four years after the wish.

These folks are so kind. The group of them are just really kind, genuine, good people. As someone who deals with employees and company culture, they just have a company culture of being really good people. You can just tell. Six years later, we all still think back on this and feel so much for all of them because of what they did that night, and the periodic things they've done since then. It's meant so much to J, made him feel so good about himself at points when he was so low.

I surprised myself a little that I cheered, and screwed, and wept a little. They so deserved it, and I was so happy to see Tanya up on that stage, smiling. I hope somehow she knows how much she did for my kid, and how much love we have for her and all of them, and how truly happy we are for them.

Being Aware of the Cost

noreply@blogger.com (Jen) — Fri, 13 Sep 2013 02:30:00 +0000

I went into United Healthcare for something or other today and noticed that they have a downloadable Excel Spreadsheet that makes it easy for you to see all the numbers that you probably don't want to think about. I downloaded one just for the kiddo, 2013 so far.

Billed by Doctors: $39,782.88
Paid by the Insurance Company: $16,674.56
Paid by Us: $1,339.71

So far, we're a losing proposition based on what the insurance company has to pay. They've already paid over what we'll pay in premiums all year, including what the company kicks in. We bought up, too.

Well, obviously. With costs like this, who wouldn't?

If you don't have insurance, and you pay in cash, you generally get a 20% discount. In our case, that would have been $7,956.57. We would have owed $31,826.31 if we were uninsured, $15,151.75 more than the insurance company paid. If a minimum wage worker is employed full-time (forty hours per week for 52 weeks), that worker would earn $15,080 annually.

Keep in mind, we have not had any surgeries in 2013. Routine pacemaker check. This is a run of the mill, average year for complex CHD. A Holter Monitor. Echos. EKG's. Medication. Oh, wait....

The spreadsheet doesn't include medication.

My friend asked me once years ago to come up with one single bit of advice I would give to new parents that have found out their child has CHD, and I remember waxing poetic on how you can get through it and its not the end of the world and to breathe and blah blah blah.

Now? I think that one piece of advice is to make sure you get damn good insurance. I'm very grateful for mine.

Old 16mm Congenital Heart Defect Film

noreply@blogger.com (Jen) — Mon, 01 Apr 2013 21:27:00 +0000

It's a little weird to watch, but somewhat fascinating.

As I was posting this, "Breathe Me" by Sia started playing from somewhere in my computer simultaneously when I previewed the post - I think it has to do with some code or something in the Blogger Preview, but I couldn't find where it was coming from or turn it off. It was really bizarre.

The universe is funny sometimes.

(Ha, just figured it out - the preview and a plugin I installed to autoplay Youtube buffered combined the above video and the sound from "My Beautiful Scars" to make for a very interesting experience.

The symptoms start.

noreply@blogger.com (Jen) — Sun, 24 Mar 2013 16:13:00 +0000

We’ve been pretty lucky that, for the most part, we’ve not had symptoms of CHD. Subvalvular aortic stenosis tends to be one of those CHD’s you don’t know about unless someone picks up on it, or it gets really bad – we were lucky that an on the ball pediatrician decided to send us to a Cardiologist when the kiddo was two to confirm that the murmur she heard was nothing. For the most part, though, we’ve dealt with things before they became symptomatic, and usually had pretty strict directives not to push things too far in daily life. So, I never dealt with what a lot of other folks have, like syncope, fatigue, eating issues.

Something’s changed, though, and we may be going through that now.

Changes kind of crept up. I don’t know if they’re from medication, depression at the thought of going through all this crap again. I have no idea. The kid’s sleeping a lot more than he used to. He can’t seem to finish his feed – there’s actually a point at dinner where he pushes away his plate, and doesn’t want anything but water almost like a switch going off in his head. He has a look on his face like suddenly, he feels ill. He’s fatigued. A lot. We really all just noticed that it’s become a pattern last night.

I emailed the Cardiologist, and I’ll wait and see what he says, but … yeah. Just …

Rearranging Life around the maybes.

noreply@blogger.com (Jen) — Sat, 16 Mar 2013 17:47:00 +0000

This week, I took out my first ever bill consolidation loan and paid off all my credit cards – which was, to some extent, kind of funny, as most of the credit I have is secured. I hate being in debt, though with CHD I have to admit it is, to some extent, a way of life whether you choose it or not. We now have enough to pay the full deductible on whatever surgery may come, though it would just get us back into debt again. Those cards have been iced, earmarked for disaster.

We still haven’t been on vacation. I think that, more than anything, has bothered me about how I’ve handled his illness (yes, for 12.5 years now) – we’ve so rarely traveled, and its something the kiddo loves doing. Being in a new place, seeing new things. We went to Vegas once, and the kid fell in love with Vegas. We went to Orlando once, and he fell in love with Orlando. We went to Sarasota once and he fell in love with that. Heck, we went to Detroit once and he fell in love with that.

But all those “once” trips are the extent of our traveling. When I was growing up, we went so many places and saw so many things and though I grumbled sometimes, now that my father has passed away, its those times I most fondly remember.

There were always excuses. First it was custody issues. Then it was my company. Then it was my new job. Then it was the surgery. And the other surgery. Then it was a sick pet. Then the debt from the surgery. It’s always something, was always something – and now, I have a kid one year away from driving, and I know vacationing with Mom is going to quickly lose appeal.

I spent evenings this week rearranging my financial life from my old surety (no surgery for 10-15 years) to my new reality (these doctors really can’t predict a damn thing) and my old financial approach (there will be time after X gets paid, let’s get the bills down first) to my new understanding as I look at my child becoming a man (you have now and only now for sure – take it).

So, we “bought” a couple of timeshares on the resale market – I’d been hovering over sales for a few months trying to find that too good to pass up bargain, and I finally found two.

By the way, never buy a timeshare from a developer – they’re real estate, they’re deeded, they can be bought and sold and the resale market is as low as its ever been. Go here, and read a lot and ask a lot of questions. You can pick them up free since for the most part they are currently worthless except to the person that uses them and wants them, and many you can’t give away – some folks that really want to dump them pay this year’s fees, pay for the transfer of the deed, pay the resort transfer fees.

This is how we got two vacation weeks in two resorts (one in Las Vegas and one in Gatlinburg) for $106 out of pocket this year, both one bedroom condos.

To the right is one of the Vegas rooms at the Desert Club. It rents as a hotel room for about $130/night, and we effectively pay $83/night in our taxes/property maintenance fees. We also got one at Tree Tops in Gatlinburg (see left) for effectively $69/night and I see it going from $99 to $171 a night.

Of course, we now own them for eternity, though when we tire of them we will pay it forward and give someone else the chance to get into them for a $ while we pay all the transfer fees. Or we’ll keep them. Or trade them. Or rent them. Or become the vacation fairy to our friends.

We had been looking into this before the surgery bombshell dropped – I am a terrible vacationer. I make plans, I book, and then I cancel because everything other than my own sanity seems to take precedence. I was starting to realize this was important, though – both my sanity, and time for us to just get away as a family. We didn’t do it nearly enough, and when we made plans we always had it so low on the priority list that we’d eventually just give up and cancel. Hopefully, this will enforce R&R discipline, as well as save us money since there are kitchens in both. Because now, go or not, I’m paying anyway – even if I go and work, at least I’ll go.

My husband and I started playing http://www.myvegas.com/ which was fun at first, and now is mind-numbing but we each have about 40,000 “reward points” to cash in for free things in Vegas, like dinners and show tickets. At this point, I have muted it and have it running as often as I can, but hopefully that will make Vegas a bit cheaper.

And why am I posting all this on a CHD blog?

Well, funny enough, obsessing over all this – timeshares, how to vacation cheaply but well, where to go, the bill consolidation – has kept me from obsessing over the surgery. The last time we had an open heart, the doctors were arguing so much the entire endeavor from “Hey, I think we need to go in again” to hospital check in was almost a full year. And for that full year, I spent a lot of time locked in the master bathroom with my hands over my mouth, weeping quietly as I slowly fell apart.

I just feel like I can’t go through that again. I can’t let myself go to a dark place and sit and brood.

And so, I’m obsessed with this.

I don’t know whether it’s healthy or not, but I haven’t fallen apart yet, so I think that’s a good sign.

I think.

New CHD Video Out

noreply@blogger.com (Jen) — Thu, 14 Mar 2013 19:02:00 +0000

How awesome are these kids?

The other shoe dropped. Along with a flip flop.

noreply@blogger.com (Jen) — Wed, 06 Mar 2013 07:06:00 +0000

A year and a half ago, we sat in Texas Children’s Hospital, and were told that the surgery was a success. The surgeon said that he didn’t think there would be another surgery for 10-15 years. I breathed a sigh of relief. We struggled with recovery. We felt going to a world class hospital got us a world class fix. We were good now. Things were looking up now.

Yeah, not so much.

After the surgery, as we moved to every 3 month appointments, then every 6 month appointments, then finally we made it to that awesome "we only need to see you once a year" golden moment of idling awareness, I got complacent. I got cocky.

We had sacrificed greatly for this last surgery. I risked my job by taking weeks of vacation. We relocated for 3 weeks to another city. We paid an enormous amount of money. We did everything right. We earned a break.

Didn’t we earn a break? (Incidentally, when you yell this at the universe? It doesn’t really answer, in case you were wondering.)

A couple of weeks ago (during CHD awareness week, in fact), we saw the cardiologist, and the electro-cardiologist. We were told by both that their respective areas are wonky, and we may have more surgeries. One to potentially replace the top lead in the pacemaker, which is not sensing beats correctly…

…and our fourth open heart to replace the aorta.

It is narrowing, and the velocity numbers are climbing. I was told this is not unusual with Subaortic Stenosis. It’s common with this particular defect for it to just keep coming for you.

It’s relentless.

When you’re not bracing for the world to come crashing down, I can report that it makes you feel kind of dazed. I had one of those moments, like when we got the diagnosis all those years ago. “I’m sorry, could you repeat that? We need what? A what?”

I have not gone into a panic this time. Oddly enough, the fact that this is so soon after the last one has sort of helped – we’re still recovering from it. I think we’ve all just absorb the news with a resigned nod. The medical guys will debate it for a few months – we’re “lucky” things are progressive. It won’t become unmanageable overnight. We probably have some time. A few months. Maybe a half a year.

But its coming. Again. We were told 10-15 years – if we’re lucky, we’ll have two years without open hearts. If we’re lucky, we’ll have the summer. If we’re lucky. (Our lucky is different from normal people’s lucky.)

I am resigned. After three, what else can I do? Be angry? Cry? I’ve done all that. Three times already. Fourth if you count the diagnosis.

It doesn’t do a damn bit of good.

We have a life to live until then. I have a job to do, he has a social life to live, we have time to spend as a family, places to go, vacations to take. I am not letting this surgery stop our lives again the way it did last time. I will not let it take any more from us than it has. I am done waiting for time to be there, for things to clear up, for this thing to stop attempting to fuck up every bit of peace and every lull we try and get.

There is no wait, there is no later, there is no next year, there is no after.

That’s what I’ve learned.

Well, that, and that surgeons and doctors prognosis mean squat, but that’s another rant for another time.

From the inside, looking out.

noreply@blogger.com (Jen) — Wed, 24 Oct 2012 22:19:00 +0000

So, things get better, and worse, and better, and worse… it’s some never ending cycle. Oh, right – that’s life. I think we CHD-affiliated folk just live it on fast forward.

The kiddo was back to the doctor today as he has a deep cough again. He just went through a round of antibiotics so we don’t really know if he’s picked something up from someone else since he finished the round last week, or if this is something entirely new. His lungs sound clean, but he has a deep cough that makes me freeze every time I hear it across the house.

And of course, I say “kiddo”, but my son is a young man. Fourteen (and not newly turned), interested in dating a drama and all those other things the kids are into these days. Doing all those angsty teenager things. Stoically handling the fact that his doctor won’t allow him out of the house until the second round of antibiotics take hold without complaint, choosing not to bitch that the fact that he’s not allowed to be around anyone but us for several days is more than a bit of an inconvenience.

He has a social life, damn it, and this pesky little cough is cramping it. This was so much easier when he was five years old.

Of course, it cascades to the whole house – then we become paranoid to go out, lest we bring germs in. So, we’re all in, grateful for Netflix and Cable TV.

And the weirdest thing to me, honestly? How it’s all become normal.

You really do just get used to it all. The pills and precautions and interrupted plans and postponed outings.

Just replace the heart.

noreply@blogger.com (Jen) — Sun, 07 Oct 2012 02:31:00 +0000

My family’s never been really clear on the seriousness of what we deal with medically. I remember my mother once asked me why they couldn’t just give the kiddo a heart transplant and “be done with it”. Other people over the years have asked me why J can’t just get a heart transplant to solve the issue.

Heart transplants are lifesavers – they’re also a last resort. The heart not your own is a foreign body to your body, and while the immunosuppression drugs work against it they simply aren’t a guarantee. They also have to be taken for the life of the patient because the body’s rejection and attack on the invader – the heart keeping the patient alive – can happen at any time.

Rejection is most common in the first six months, but it can happen at any time and watching for it is an ongoing issue.

This is a beautiful, beautiful video of the chance at life organ donation and heart transplantation can give – the story of Jacob and Mia’s heart.

For Jessica from Lilly McDowell on Vimeo.

I just heard tonight that Mia was on her way to her Make a Wish trip when the family discovered that she was in heart rejection. Tomorrow, life support will be removed, and the valiant effort that everyone made to beat Mia’s CHD will come to a close. Her family has done quite a bit to share their story, and to demonstrate how important it is to become an organ donor. My heart grieves for them as they go through this.

It’s the thing that those with complex CHD have such a difficult time getting across to folks – the fact that there is no touchdown, no end game, no ball spiking. You don’t cross the finish line, reach the goal, or make the basket and celebrate. There are a series of little (and big) wins, little (and big) losses.

Life still has to be lived. Plans made, movements forward. Most of our kids make it now, statistics have never been better, treatment (especially at the best hospitals) have never been as successful. Time has been granted to us in abundance, and we take all that we can get with gratitude and deep humility. We take the lessons and appreciate each day, each moment, each experience.

Each and every heart beat.

Lots of people don’t understand – trying to live normally, but respect the risks. Pushing forward, but be aware. Knowing and being alert always, but not letting it rule you. Appreciating that no one knows how long they have, and being grateful for the extra-awareness of time’s ticking to be able to more deeply appreciate life.

I know the McDonalds did so, and I hope you’ll join me in praying for them and for Mia.

Please sign up to be an organ donor. Every moment counts.

A bit foggy.

noreply@blogger.com (Jen) — Wed, 26 Sep 2012 02:55:00 +0000

The apposite next step is the life-saving, yet life-changing connection to the heart-lung machine. It is basically a mechanical heart in the sense that the patient’s heart is stopped, but the rest of the body still needs to receive appropriate and very necessary oxygen-rich blood.

Why do I believe it is life-changing? There have been studies regarding what the heart-lung machine does to a patient’s mental abilities once the patient is out of surgery. Its afterlife effects have been noticeably affected by moi.

See? I’m not as funny and it’s the only French word I remember after eight years of French in school.

I’ve been told, I forget by whom, that the heart-lung machine can affect memory. I can’t remember if that’s true. I’ve also been told that the heart-lung machine can induce a sense of fogginess and this is exponential with each passing, let’s say, hour a patient is on the machine.

I can’t tell you who told me this because I’m a bit foggy so I don’t know if it’s true. Where was I?

(This memory abuse is so true that in my teaching career, I ask the student in my classes who I believe to be the most alert to always help me stay on track when I go off on a tangent and then completely forget where or why I even went on that tangent.)

from Robby Benson’s “I’m Not Dead…Yet!”

I also just learned that there is something called “Cardiac Depression”.

Again – learned it from Robby Benson. Not anyone with an MD behind their name.

Hey, Pumphead.

noreply@blogger.com (Jen) — Sat, 22 Sep 2012 05:38:00 +0000

He can’t sit still. I’m not entirely sure why I never noticed it before, but he can’t sit still.

I finally got a better graphics card on my computer, and that meant we could cut together the footage from one of the Kiddo’s pacemaker interrogations. He decided he wanted to film it so he could see what he looked like, and because no one else seemed to ever film their interrogation. When he went to look for what it was like he couldn’t find any video of what to expect.

He and I worked on cutting it together, and he added captions. Later on, my husband came in to see what we had done and Kiddo, having lost interest, left the room. As we watched, my husband muttered…

Dear Lord. He really can’t sit still. It’s amazing. He just can’t stop moving.

I watched closer, and I saw my husband was right. First it was the leg bouncing. Then it was the hands fidgeting. Eyes darting. Knee again. I thought maybe it was nerves…

OK, I knew it wasn’t nerves.

The debates are still ongoing – maybe the brain fog is caused by mini-strokes, nearly undetectable, from the surgery. Maybe it’s caused by the aorta being clamped and its release of plaque into the blood stream when it’s unclamped. Maybe it’s the oxygenation on bypass not being precisely correct as it tries to mimic natural oxygenation. Maybe all of these things. Maybe none. Maybe things we don’t yet understand.

John McDougall, MD (who is, granted, a little bit of a zealot about the natural foods) wrote this fascinating article about Bill Cinton being foggy after his bypass, attributing his “off” behavior during Hillary’s 2008 Primary run to pump head. He wasn’t the only one. In fact, a lot of people started talking about pump head.

Dr. McDougall did so quite vehemently:

In 2001, an article in the New England Journal of Medicine reported that 5-years after bypass surgery 42% of patients showed decline in mental function of approximately 20 percent or more.2 A study published this year (2008) in the Annals of Thoracic Surgery using MRI testing just after bypass surgery found brain damage in 51% of patients.3 Three years after their time on the bypass pump, significant permanent reduction in mental capacity was identified in 31% of patients. I am not talking major stroke here; but these patients can't remember names or numbers as they once did, experience sleep disturbances (including nightmares), suffer mood swings, and lose intellectual acuity. Approximately 30 percent of people suffer persistent depression and some even contemplate suicide.
Our former president needs our understanding and support. A simple explanation by his doctors of the cause of his recent aberrant behaviors should bring peace of mind to Hillary and her campaign staff. If Mr. Clinton better understood his current limitations, he and his staff could take precautionary steps to avoid embarrassments. A long-overdue explanation would help his adoring public more easily accept his mistakes and readily forgive him. It is not your fault, Mr. Clinton.
As importantly, public recognition of the harm done to Bill Clinton by the heart surgery business would help the patients who undergo bypass surgery, and their families, to better understand similar changes they have experienced.

It’s funny, at the time I thought they were partisan attacks. We had done two open hearts and no one had ever said anything to me about this cognitive problem crap. I figured these were just all folks jumping into the fray to insult Clinton.

Yeah, my tune has changed.

We began seeing a psychiatrist a week ago that specializes in treating folks with long term/potentially critical illnesses, and in one session as we laid out what was going on and why we were there. The doctor stated it was clear that the Kiddo was having issues from the open heart. He waved his hand in the kid’s direction and stated “It’s obvious just to look at him.”

We call it “the fog”. The cardiologists call it pump head – but not in front of us. Officially, postperfusion syndrome. Postoperative cognitive dysfunction. Whatever. It’s the fog.

I’m grieving all over again in some ways. Years ago, he came home with a “Commended” score in standardized testing for math. We hired a private teacher because his reading scores were far above his grade level, and school wasn’t challenging him. He would sit and read for hours. He could do math better than I could.

Now, he struggles, and complains that math from last year is too hard. He had to leave an advanced class that he desperately wanted to take because the scientific concepts that he had understood a couple of years ago were too difficult to understand now, and he was embarrassed that children younger than him were better and faster than him in comprehending. He is angry, as being the “smart kid” had been part of his identity, his incredibly high intellect and educational goals a source of pride.

He struggles with what it all means now. As are we.

We are, again, having to rethink our future, and his future. Once, he had asked us if we would let him live here and help him if he wanted to get a PhD. Now we’re trying to determine how we get him through college.

We have to see the neurologist and find out whether we can see if his brain was damaged in any way. I cringe when I see posts like these, where someone knew they were “off” and family members didn’t believe them. Then, suddenly, an MRI shows the damage – oops, guess he was telling the truth. And not even full blown brain damaged – just “off”. Different. Just slight enough to rock your world, just subtle enough to make you wonder what the hell is wrong with you.

Part of me doesn’t even want to know. Not sure that knowing changes anything – what has been changed has been changed, and we have no idea if its ever going to go back.

Thank you, Stacey! (CHD at the DNC)

noreply@blogger.com (Jen) — Mon, 10 Sep 2012 21:55:00 +0000

CHD at the DNC!

CHD at the Democratic Convention

Thanks, Lihn Family, for sharing what CHD folks deal with. If you want to learn more about the Lihn family, check our Stacey’s blog: http://www.thelihns.blogspot.com/

You do the best with what you got. Then you pray.

noreply@blogger.com (Jen) — Wed, 08 Aug 2012 03:20:00 +0000

This week has been a banner CHD news week, at least for me in coming across stuff.

If you have CHD, other things may go wrong developmentally.
I learned more about postperfusion syndrome after a new study came out, and scared myself silly.
Pediatric cardiologists can’t read EKG’s. Even if they can read them, they can’t tell you how to avoid sudden cardiac death. Even if they can tell you how, they may not know whether it applies to your kid.

Developmental Disorders affecting Brain Function

These are, you know, not good. If you have CHD, you may have…

These conditions include undergoing open heart surgery in infancy, having a congenital heart defect that causes a child to have a chronically blue appearance, or a combination of congenital heart disease and one of the following issues: premature birth; developmental delay as a baby; suspected genetic abnormality or syndrome; history of mechanical support to help the heart; heart transplantation; a history of cardiopulmonary resuscitation; prolonged hospitalization during the child's heart care; seizures related to heart surgery; and brain abnormalities noted on brain imaging.

Then again, you know, you may not. You know how you find out? Go see more doctors – because we don’t have enough medical bills from the CHD.

Looking into these issues also brought me back to pumphead – in 2001, Duke University brought out what was, at the time, a definitive study on “pumphead” (now known as Postperfusion Syndrome). Then people argued with its methodology and that it wasn’t accurate. Then in 2009 The Annals of Thoracic Surgery published another study that said Duke was right, it exists, and there are correlations as to why and when it happens.

We did our first surgery in 2000, and second in 2004. When we went in the first two times, no one ever uttered the word “pumphead” (the slang locker room term for what doctors saw, but there was no name for) to us, or told us anything about postperfusion syndrome – in 2000, it didn’t exist formally, and in 2004 it wasn’t fully accepted as fact. We learned about it later in a roundabout way when our CHD kid played with other CHD kids, and we learned that they all shared many of the same things – difficulty concentrating, absolutely horrific handwriting. We knew there was some correlation, but no one knew what or why.

Since the kiddo was young, we didn’t notice that dramatic a change in cognitive function. If it did take place, it wasn’t enough to be noticeable.

This last time is a different story.

So, that's what happened to me.

This article explains an older patient’s experience dealing with “pumphead”. The first comment, which says simply “So, that’s what happened to me.” reached in and twisted my guts up.

Parenting a child who was born with CHD, who has been on bypass three times, who’s last time “on-pump” was exceedingly long, can be incredibly challenging. With “normal parents”, they may know their child so well that they can spot willful misbehavior.

“I told you to take out the trash!”

“I forgot!”

“You did not! You just didn’t care enough to remember, now do it!”

I can’t just go to that.

When my son says “I forgot” it may very well be that he just didn’t want to pick his rear up and go take out the garbage like any other teenager on a lazy streak.

And it may be that his brain is slightly impaired, his short term memory is shot to hell and will be for the next four years (or forever) and my admonishment that he willfully chose to misbehave when he truly cannot physically remember may cut him to the quick emotionally. It may make him feel helpless, angry, and frightened – because his brain is betraying him.

I don’t know which it is. It could be that after surgery, my son turned into a lazy teenager and he just doesn’t want to help with anything. It could be that he doesn’t care. It could be that he’s entering that “I don’t have to listen to you” phase.

He cares so deeply, though, and he’s so wounded when I am disappointed in him that I can’t believe he would deliberately anger me just to get an extra three minutes on a game. I know, somehow, deep within me that his brain just isn’t the same anymore. He and I are incredibly close – and I’m not just saying that in that parentally delusional way. CHD binds families almost as much as it tries to tear them apart. He is a rebel and independent, but not willfully rebellious – when I disapprove, he is torn. He confides in me, he cheerfully helps if I ask him to help out right then.

If it’s in 5 minutes? Forget it. You’ll never see him. And he won’t say “Sorry.” in an apologetic blew-you-off way. He won’t say he was going to. The answer, now, is always the same. “I forgot.”

He forgets what I ask him to do, he forgets plans with his friends, he forgets to take his medication. He just forgets, everything. All the time.

As we talked through what was going on, and he described things more and more (how hard it was dealing with all this and the aftermath of facing the surgery and how he felt after), I researched more and more. I became convinced that this was due to the surgery, somehow. I may be wrong. But I think it is.

I explained to him what “pumphead” was, the symptoms, gave him articles where other kids described how they felt.

“So, that’s what happened to me.”

I told him maybe. Maybe not. There really isn’t any way to know. There’s no test, no indicator, no definitive positive or negative. But maybe.

So what do we do now? Learn to live with it. Work around it.

And pray the fog clears.

Modded Pacemakers and heat waves.

noreply@blogger.com (Jen) — Tue, 26 Jun 2012 19:53:00 +0000

According to American Heart Association, people with heart disease should be checked on at least twice a day during a heat wave and observed closely for signs of heat stress. They should stay in a cool place as far as possible, drink water before stepping out in the heat.

In other words, this whole vacation thing is down the tubes. Well, not down the tubes, but inside the house and when out of the house, only near air conditioning.

I haven’t quite gotten comfortable yet with taking many “risks” yet. My kid calls me over-protective – he’s now at that age where Mom looking at his nail beds is annoying, unwanted, and pisses him off a bit. I can understand that. It also doesn’t matter much to me. I’m still going to look at his nail beds. It’s habit.

So, what’s new, besides insane amounts of heat and a higher electric bill?

The kiddo’s pacemaker was modded last week – granted, they called it a customized adjustment, and he prefers the term “modded” because it’s a far cooler phrase at his age. With the heat having been what it’s been, we haven’t pushed it to its new higher revving speed.

We did get “the talk” with all the new things we have to remember. If he goes to a hospital, we have a new card to give them explaining the pacemaker was custom modded and when they hook him up to the mothership, without the custom software they won’t be able to tell what the upper end is. So, now, that’s two cards – one card with the pacemaker identification, and one piece of paper explaining the custom modding. I attempted to get this information in medicalert, and they don’t even have a place for it. I had to call in and have them send to a desk and add a manual alert and…

[sigh]

It’s funny how it all just becomes life. Staying inside because the heat is dangerous, an hour on the phone with Medtronic, and then with Medicalert. Watching the nurse call tech support on the customized software to reprogram your kid’s heart because she can’t get the software to work and hoping that the tech support line is staffed by people on the ball that day. It all becomes this weird idea of normal.

Occasionally, like in the last post, I get moments of “Really?” where I am just hit with how different everything is for us in a few important ways, how many compromises, how many missed opportunities, how much interferes. How disappointments hit a little deeper because raw is so close to the surface.

On the other hand, blessings feel so much more awesome – all extremes, all the time, I suppose. This has blessed me, and my kiddo, with an incredible capacity to adjust, and quickly, that benefits my life in so many ways.

Those moments of “Really?” do, admittedly, really suck. I get down temporarily, especially when I hope for a really awesome scale balance to some really awful suckiness, and it doesn’t manifest.

Then I remind myself….

I keep reminding myself it wasn’t all that long ago that this was all so much worse, and we’re very lucky. Very lucky.

(The image above is from a great booklet available on the internet called “Balancing Your Life with Congenital Heart Disease”, a booklet written for young adults. If you have a teenager, I highly recommend sitting them down and going through it together. They’ll get a kick out of making fun of you when you hit the page that mentions their overprotective parents.)

I admit it. Sometimes I feel sorry for myself.

noreply@blogger.com (Jen) — Sat, 23 Jun 2012 03:55:00 +0000

I had this anticipation built up all day at work, knowing that at 5PM, I was out the door and on vacation. I didn’t jet out right at 5PM, though. I’m not really a clock watcher, so even though I really was watching the clock today, I missed it. At 5:16PM, I had an enormous amount of work dropped on me.

The most tedious, I delegated, and the other things I began working on. The IMs came in.

“Aren’t you on vacation?”

“I have some work I have to get done.”

My child, annoyed that I couldn’t stop working, asked to go spend the night at a friends house, and asked if he could stay the weekend since, you know, I was still working. What I delegated came back several hours later, completely wrong and needing to be totally and completely redone. Hours of work.

It’s 10:42PM as I write this, and my “prepare to leave for vacation” day is long over. I’m into hour 13 of a who knows how long a day. I already missed the first thing I had planned – the celebratory dinner gathering that I was on vacation.

I wasn’t. So, I canceled.

At the moment, I think we should get a pass on certain things. I probably won’t feel this way tomorrow – I’ve never been one to use Jacob’s CHD to manipulate people into sympathy. I think we have responsibilities, just like everyone else. We should suck it up, and do them.

But you know what? I get tired sometimes. Tonight, I’m really tired. I’m sad, and I’m tired.

I really shouldn’t feel sorry for myself – so many people have it so much worse than I do. In many ways, I am exceedingly lucky, and I don’t work this hard because I feel some sense of frustrated obligation that is resented. I work this hard because I am proud of what I do, and I enjoy working hard. Most of the time, I am really happy with my life.

Most of the time.

Occasionally, I just need a break. I’m at that point where I really need a break, just for a short while. And I feel like it’s exceedingly hard to get it. Some parts of me feel that I could just avoid this disappointment by never expecting it, as fatalistic as I know that sounds.

I have Dad’s disease, I guess. I feel like I work so hard for my family and my child, and the price is I never get the time with them that I want. The price is never really being able to stop and fully enjoy it.

I have no doubt that the insurance company denying coverage for some of the kiddo’s heart surgery to the tune of $9,000 ten months after the fact probably has something to do with my malaise today.

Today, yep. I am feeling sorry for myself.

The Euphoric Terror of the Open Heart

noreply@blogger.com (Jen) — Thu, 14 Jun 2012 05:39:00 +0000

I’ve recently finished reading a few really good CHD books (you can view them on my CHD shelf on goodreads) that outlined a lot of the history of pediatric cardiothoracic surgery. A lot I was stunned to learn.

Even understanding a lot more about it, even appreciating the amazing strides we’ve made in such a short time, even having an immense amount of respect for the doctors and the procedures and the brazen audacity it must take to reach into someone’s chest and stop their heart … it is still the thing that freaks me out the most.

A lot of people don’t get the difference in surgeries. There’s minimally invasive surgery – it’s done by robots. There’s off-pump bypass surgery. Closed heart surgery. Catheterization. Google “first heart surgery”, and you’ll get 5 different answers on the first page.

Open heart was the holy grail for a long time – “Make it not move, and get all this blood out of the way so I can work!” Until the 1950’s, no one could do that, and they kept trying though it killed a lot of people while they tried, and failed – oxygenator, hypothermia, cross-circulation. Now, for open heart, they use Cardiopulmonary bypass.

And by “open heart”, they mean exactly what they say it means – they are going in there and they are opening the heart.

The lungs deflate, and the heart stops beating. A machine oxygenates the body. And the machine isn’t the kindest machine ever – our blood cells don’t like the hard plastic and metal, and it damages them. Our lungs don’t like to deflate, and inflation may not be complete. The heart-lung blood circulation system and the connection surgery itself release a variety of debris into the bloodstream, including bits of blood cells, tubing, and plaque. It can cause complications. Some long term.

It is a gamble. On the one hand, if you do nothing, it is really bad. On the other hand, if you do this, you risk other things that can potentially be just as bad. When you truly learn about all the risks and damage the cure can cause, it becomes amazing and awe inspiring that anyone gets wheeled out and opens their eyes again. It makes you believe in some power greater than what we see, something blessed animating those hands in that operating room.

And why am I thinking about all this? Tomorrow, Max Page is undergoing open heart surgery. You remember Max – he’s Darth Vader.

The reason I just bought a Volkswagen

They held a press conference and the doctors shared precisely what was going on and what they would do and what his current situation is. I thought that was awesome. I am so grateful to the Pages because they have embraced their fame to let people in and see what they go through. It’s been awesome to watch Max become an ambassador for the disease, the struggle, the hospital that saved him, and his demonstration of the incredible bravery of these kids.

No, he doesn’t look sick. Or act sick. But he is.

It is one of the most difficult moments in dealing with CHD of any kid. As a parent, it is the worst timespan of your life. The night before, you try and stay numb, and calm, and do what you need to do. G-d help you if the numbness wears off too soon.

My control would always waver as we said good-bye. As I stood at that line that marked where I could not follow leaning over that bed, my hands would start to vibrate and pain and fear would begin cracking through. Some people show it more, some people less. Everyone feels it.

It’s not natural, not a natural thing for a parent instinctively, to hand their child over to someone that will then stop their heart. We may intellectually know it has to be done, but that primal urge to flee tears at many, if not all, of us.

The self-control it takes to not freak out is immense. And we have amazing self-control with our kids – it’s everyone else it comes out on. Loved ones, friends, co-workers. Little things become valve openers and steam bursts through onto unsuspecting bystanders.

It is probably one of the hardest, if not the hardest, things as parents we are asked to do. Sit in a hospital and wait quietly while in another room somewhere nearby, our child’s heart is stopped – the greatest thing that we fear is the thing that we must let happen to fight this. We sit quietly and hold on to the faith that it will all be ok, and cling to the fact that despite it’s brutality, it is a miracle that it can be done at all.

Thursday, my heart will be with Max Page, and his parents. While his heart goes silent, the rest of our hearts will beat for him until his beats again, repaired.

For one day, I don’t want to consider the pacemaker.

noreply@blogger.com (Jen) — Sun, 10 Jun 2012 08:15:00 +0000

I had a really fun day today. A variety of factors coalesced into the decision not to do on vacation, and to tell you the truth, I am kind of grateful. Yes, ok, we paid some medical bills with the money. I tried not to. But they are just there, all the damn time.

Staring.

Like ghosts haunting the house, or that man-eating plant from “Little Shop of Horrors” that would stare at everyone and look pathetic or threatening or friendly or owed, depending on what would get him fed.

Anyway.

We did give them some of it, but not all. We toyed around with all sorts of big dreams and fun treats, and then realized after enjoying ourselves far too much pretending we had the money to be extravagant, we paid a good portion of it to the hospital. It did make us feel better.

Just not in the same way a beach or a cruise would have.

The vacation had started to become incredibly stressful. It started with the “what rides do we go on”. Then it went to “if we go and he can’t do most of it, are we just paying money to make him feel bad?” and then it morphed to “Well, let’s just not go.”

We have to go back in the next couple of weeks to have the pacemaker readjusted – Medtronic came out with MRI safe pacemakers, which is pretty awesome since pacemakers haven’t been MRI safe and if you had a pacemaker and you needed an MRI, you didn’t have any options. While that was great, the one we got topped out at 150 beats per minute. I guess if we use the kid’s real resting heart rate of 30 bpm, his target rate for exercise might come in below 150, but if we use what his pacemaker is pacing him at… well, not so much.

The cardiologist could not adjust it over a 150 max rate as Medtronic has hard set the max there, and our Holter Monitor demonstrated that any exertion slammed him at 150 bbm and that was it, he could go no further. I have now been told that they got permission from Medtronic to adjust it but we have to come when the Medtronic guy is there to override the ceiling cap.

No, this doesn’t make me nervous at all. [rolls eyes]

To take my mind off of this imminent weirdness, I went shopping. We took some of the bonus and decided instead of going on vacation and trying to squeeze it, we’re going to plan a bit better (as we are at a point where we can see the end of the avalanche open heart surgery medical bills) and go later on in the year, and would instead buy a dinky pool so we could staycation, and stay around town since vacation will actually be a week after Medtronic apparently test cases the pacer’s new ceiling (which apparently it was not intended for) so it’s probably better to be around here anyway.

So, today, I bought stuffs. And it was fun. And I almost felt triumphant, like I was getting over on the hospital bills.

I don’t need this. But I will buy it. Take that, CHD. Ha!

The kid came home with some bright, shiny crap he didn’t need. Which was, admittedly, fun for a change.

Ah, the new normal. What fun.

Bite me, CHD. One more fun thing you stole. Pfeh.

noreply@blogger.com (Jen) — Thu, 07 Jun 2012 07:17:00 +0000

I got a bonus at work, and so we’re going on vacation. It was really unexpected, too – I’m not sure if I don’t expect things like that, or if it’s a side effect of the emotional work that I’ve done over the past year about accepting things the way they are and learning to adjust and still be ok with them, but I didn’t expect it.

And I wanted to go to Universal Studios – I have this ridiculous obsession with fake happy places. It’s ironic, too, because I love nature and at home, I’m obsessed with it. We live next to a nature preserve, deer run outside my office window, Texas rat snakes scurry out of my way outside. We love camping in tents, rafting, bouldering – and for vacation, I love Orlando and Las Vegas, the two fakest places on the planet.

I wanted to go to the fraudulent Hogwarts – back when it launched, the kid begged to go. Of course, that was before OHS3. OHS3 nuked vacation, It nuked a summer of fun. It nuked everything last year. I promised him that we could go when he was better and now that he’s better, he doesn’t want to go anymore.

Now, he has full heart block and arrhythmia, and now, he can’t ride most rides anymore. Before, that wasn’t the case. Now it is.

Thrill rides? Too fast, out.

"Individuals who have suffered a heart attack, have heart disease or irregular heart rhythms should not ride a roller coaster," said Jurgen Kuschyk, M.D., a cardiologist at University Hospital in Mannheim, Germany. "The rising heart rate in riders with pre-existing heart disease could result in heart attack, irregular heart rhythms and possibly sudden cardiac death."

Then there’s the pacemaker – he can’t ride any ride that has restraints that may go over the pacemaker. Or that would be bumpy and jar the area with the pacemaker. Or that would look sideways at the pacemaker. Or would breathe on it wrong or get magnets too near it or who the heck knows what else.

I spent three hours looking at the rides at Universal Studios trying to figure out what he could do, and what he couldn’t do, and because the rides are much more adult (fast, bumpy, thrilling) than Disney, I got concerned that we would spend $500 to wait in line, find out the restraints go over the head, and walk away. All day. In the Florida heat.

Have I mentioned I am a roller coaster fanatic? Yeah, our family is made up of theme park junkies, and now, that’s over. Gone. Done. Le fin.

It just became too much work. Way too much. It’s supposed to be a vacation, and we were spending so much time judging this and that and the other and making lists of “OK” rides and ok if it has this but not that and does this but not that … it just became too much work. This is supposed to be exciting. And fun. And not a sucky reminder of the sucky limitations of the sucky CHD.

Suckity suck. Pfeh.

On the whole, it’s a small price to pay. Again one of those things where you say “in the grand scheme of things, this isn’t that big of a deal”. And we are going (to Discovery Cove, Sea World, and Aquatica where coasters are not the main attraction), and it will be wonderful, and we will have fun. And considering what we get with the pacemaker, it feels ungrateful to bitch about the sideways things we lose.

But still. It sucks.

The Choices We Make (or taking a vacation with medical bills)

noreply@blogger.com (Jen) — Sun, 27 May 2012 20:54:00 +0000

One of the worst things about CHD is it enforces an almost austere sense of financial practicality – whether or not you want it to.

They even do studies on how much CHD financially sucks. Like this one, called Economic Burden of Congenital Heart Disease on Families.

Results: Of the 20 interviews, the meaning of cost resulted in the emergence of two themes, uncertainty and lifestyle change. Data could be further sorted into 3 underlying categories of financial, emotional and family burden. Inter-rater reliability was 91%. As a result of increased disease complexity, families seem to experience a high level of stress in terms of finances, emotional drain, and family member burden

I get moments where I am overwhelmed,like this post where things just look grim. We’re one of the lucky ones, too – I sold my business a couple of years ago, and purchased a place to live in cash so I have no mortgage. I have a good job that I like, and I make a good living. The year before and after open heart surgeries, though, are just always grim. It feels like we’re going to go under if one more thing happens.

We never have, though. We’re experts at stretching budgets, now. Turning things off in favor of new things. Compromising. Making choices about what’s important, and what’s not. It just sometimes feels like we do it more than everyone else, and it gets depressing.

My van started falling apart last month. It had 120,000 miles and although it was a good van, it was just that time where it was run down, and it needed more trips to the mechanic than to the gas station. My bank sent me a pre-approval letter that they’d be happy to hand me a car, and we realized that we were likely paying more money in mechanic’s bills than we would in a car payment. So we went, and got a car.

We canceled a whole lot of stuff for the car – the DirectTV, the extra phone. It was open enrollment so I redid my benefits since it was unlikely we would need another open heart surgery so soon after the last. We talked to the bank to find out whether we could borrow only $5,000 or $10,000 against the house in an emergency if something happened before we could build up our savings again, and we could. And the rate was good.

All of those things are necessary, though. We have to have a car. I’d borrow against the house for medical bills, but would never do it for a swimming pool. Or a vacation. I despise debt, and try not to get into it if I can help it.

I so want a vacation

The money that we saved up for a vacation last summer paid for the Ronald McDonald House and food while we were in Houston for the open heart surgery. After that, I had to travel to Detroit for work; since I have very close friends there, I dragged the family with me in the hopes of giving the kid something.

Though I think he had a good time, I worked and he complained that he barely saw me. Which was true (because I had been there to work) – but had I not split the cost with my company, we never could have been able to afford it. I tried to treat some of it as a vacation, but I was exhausted – every time I turned around, I was on, either at work or trying to spend time with the family.

We haven’t had a vacation since we went to Las Vegas in June of 2009. Our dog was sick in the summer of 2010 and we didn’t want to leave him, afraid he would pass while we were gone and we would not get to say goodbye (he was stubborn and made it until the spring of 2011). In the summer of 2011, we had the heart surgery and began jokingly calling the Ronald McDonald House in Houston our summer home – but it wasn’t. It was late 2011 when I dragged the fam to Detroit, but it wasn’t a real vacation – I came back from it exhausted.

It’s 2012. I need a vacation. Need a vacation. Of course, this is also a #firstworldproblem – no one needs a vacation. But I want one.

My parents weren’t the greatest parents in the world, but our family vacations live in my memory as the highlights of my childhood. I want my son to have those memories. I want us all to have that time together. I don’t want to lose those experiences because of medical bills and CHD.

The Plan

So, I came up with a plan to try and get vacations more often. There’s two places we love vacationing – Las Vegas, and Orlando. And, well, in Las Vegas, we gamble a bit, so Las Vegas is nuked for a while as it is a bit too tempting to overspend there.

Target: Orlando (on a budget)

Driving Cost is $291.58, flying cost is $900-$1300 for 3 tickets. Winner: Driving. We save an enormous amount of money driving. With the difference, we could pay ourselves $24/hr to drive. Makes no sense to fly. So, driving it is.

Motel6 is $63/night. If money were no object we would stay at either the Hard Rock Hotel at Universal Studios at $292/night, or Disney’s Animal Kingdom Lodge at $249/night. We can stay 4 days for less than one night at a nicer resort. Winner: Motel6.

So far, we’re up to $543.58, and we have a way to get there, and a place to stay. But nothing to do.

If money was no object, I would get 2 day tickets to Universal, 2 Day Tickets to Disney, and 1 Day to Discovery Cove which would come with the ability to get into Sea World. That would cost $2,105.97, and bring the “money-no-object” version of vacation to $4573.97 (fly, stay in awesome place, buy tickets to wherever). And that cost is before food.

But we’re not going to do that, as budget is important here.

Luckily, I have a Sea World near me in San Antonio, and they have season passes that offer Flex-pay. For $25 down, and $12-ish a month each, I can get a 2 year season pass that gets me into Sea World and Aquatica here (weekend waterpark trips!), but which will also get me into Sea World and Aquatica in Orlando (as well as San Diego).

Since Discovery Cove is $1000 all by itself, that’s out.

So, Sea World 1 day, Aquatica 1 day. We have two days, and no crazy ticket purchase prices.

Yet.

Universal Studios comes in with the crazy ticket prices at $419.97 for two days. They don’t have flex pay unless you get a season pass, and those are in the neighborhood of $600-ish. While we would like to come back, we may not in a year. So, now we have 4 days of vacation.

And Disney’s just out. Which sucks. But Disney is incredibly, incredibly expensive.

Our plan is to get three 10 Day Park Hopper Tickets with no expiration, which would be $1713 dollars. Since by the third day, Disney vacations and all the rushing around make you hurt, sore, and exhausted, we figure that’s enough for 3 to 5 vacations in the coming years. But it’s a huge expense initially.

So, we took our ideal vacation from $4,573.97 with all the perfect “I want” stuff, to a total of $963.55 for tickets, lodging, and gas to travel out there, or 21% of the ideal trip cost.

It’s all about compromises.