Wednesday, December 31, 2014

Pacemakers, MRIs, and Pumpheads that last a lifetime.

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.

Thursday, August 21, 2014

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

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.

Friday, January 17, 2014

Energy Expenditures

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.

Monday, December 2, 2013


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.

Sunday, November 3, 2013

Stop dragging my heart around.

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.

Sunday, September 22, 2013

Our Friends Won!

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.